“I Don’t Want Jenny to Think I’m Abandoning Her”
Views on Overtreatment
A palliative care physician helps a cancer patient cope with her coming death, while her oncologist struggles to give up treatment.
Diane E. Meier
In between seeing patients with the palliative care team at Mount Sinai Medical Center in New York City, I received from my secretary a message from someone seeking an office palliative care consultation. The patient, whom I’ll call Jenny, wanted to talk to me before she made an appointment, so I called her late in the day after the rest of the team had gone home. Jenny’s voice was upbeat and cheerful as she told me how she had found me—from an internet search—and why she had called. She was in her late 50s, a practicing clinical psychologist with a husband and a daughter recently graduated from college. She had been diagnosed with stage IV non-small-cell lung cancer six years earlier.
When I heard this I wrinkled my brow. Nobody lives six years with this kind of cancer, I thought to myself. Something’s odd here. Jenny wanted to see me to make sure her medical team was paying attention to what mattered most to her: her quality of life. There was nothing urgent; she was in no pain. We agreed to meet a couple of weeks later.
She came into the office with her husband, looking totally out of place amidst the frail geriatric population that we generally see in our practice. Elegant, slender, with a gorgeous head of curly blonde hair, Jenny was nothing like what I had expected. Her cancer story, too, was atypical.
She was diagnosed with cancer after experiencing a persistent cough. By the time she had a surgical removal of the tumor, the disease had already spread outside the lung. She then began chemotherapy and radiation at a major New York City cancer center. She became attached and grateful to the oncologist managing her treatment. Over six years she’d seen periods of remission during which she and her husband traveled the world while maintaining her busy clinical psychology practice and raising their daughter. With each recurrence or progression of disease, her oncologist thought of a new approach to try, and each one worked. Her disease was stable, and her quality of life was good. She hoped she might turn this cancer into a chronic disease instead of a death sentence.
Given how well Jenny appeared to be doing, I wondered why she was in my office. Jenny described herself to me as a “control freak”—someone who needed to know what to expect and what might happen to her. “Better to know and plan for the worst,” she told me. “That way I don’t have to worry about it.” Over the years she realized that her oncologist was unwilling—in her view, unable—to talk to her about the what-ifs of her cancer. What if this next treatment doesn’t work? What if my disease progresses and I can no longer function the way I want to? What will that be like? Will I be in pain? Will I suffocate? How will my husband and daughter take care of me? Where and how will I die? What will I need? Healthy and happy as Jenny appeared, the uncertainty and the unknown were consuming her.
Her oncologist’s reaction to each setback was to redouble his efforts to get the cancer under control. Her what-ifs were met with, “We don’t have to worry about that.”
As a psychologist, Jenny eventually reasoned that her oncologist was unable to face the possibility—indeed, probability—that Jenny would die of this disease. So Jenny came to me, hoping I could give her some answers.
We talked about possibilities. Given the unusual course of her cancer to date, I admitted the real possibility that her oncologist could continue to find ways to keep it at bay. I explained that I could become a part of her treatment team to focus on her quality of life, provide the straight answers she sought, and participate in her desire to plan for the worst while continuing to hope for the best. She relaxed and smiled, expressing relief that her concerns had been validated and that a means of addressing them was in sight.
We talked about what she might expect as her lung cancer progressed, including increased fatigue and weakness, pain, and shortness of breath, and exactly how we could manage these. She wanted to know what it was like to die.
The natural dying process for a cancer patient—for any patient, for that matter—usually involves progressive fatigue, more and more time in bed or chair, more and more sleepiness, progressing to coma and a peaceful death. We talked about what the moment of death was like: slower and slower breathing, with pauses in between breaths, and during one of those pauses, she would die. She asked what would happen if she had pain and symptoms that couldn’t be controlled. I explained that virtually all symptoms were manageable with palliative care. If necessary, there was the option of sedation, but it was quite unusual to need that. She followed my words closely and nodded her head, seeming relieved that she need not fear terrible suffering in her final days.
We talked about hospice and what it provides, which would include services such as a team available to come to her home 24/7, as well as equipment, medicine, and training and support for her husband and daughter. If things ever got too difficult at home, she could go to an inpatient hospice setting with around-the-clock nursing and medical care.
Toward the end of our conversation, Jenny said she was worried that her oncologist would feel upset or hurt because she came to see me and that he might not be comfortable working with me on her care. I was worried about that, too. I offered to call him. I would make no treatment recommendations for her without talking to him first.
The relief on the couple’s faces was palpable. Something huge and terrifying—and, to Jenny’s oncologist, unspeakable—had been brought within her compass. Smiling and excited, Jenny shifted the conversation to talk about her book groups and what she was reading and writing. They left the office with a follow-up appointment three months out.
With some trepidation, I called her oncologist and explained everything. To my relief, and that of Jenny and her husband, he agreed to work together with me on Jenny’s care.
For the following 18 months, Jenny received care from both her oncologist and me. We remained in regular email and telephone contact. When she learned, several months after we first met, that her disease had progressed, the oncologist tried another experimental treatment to which Jenny responded well.
For another year, things remained stable, until Jenny began to feel increasingly tired and started to have difficulty focusing her attention and memory. Because of the memory lapses, she worried that she should no longer continue her psychotherapy practice. With her oncologist’s agreement, we tried corticosteroids to reduce the swelling around the tumors in her brain and psychostimulants to improve energy and mood, which helped. She kept practicing but canceled a major trip and conserved her energy for home and work. She had no pain and experienced some shortness of breath but only when she ran for the bus or climbed a flight of stairs.
Several months after she first noticed the memory problems, she awoke with a headache and blurred vision. Brain imaging showed an enlarging mass that was progressing despite systemic chemotherapy and corticosteroids.
Jenny came to see me in the office to talk about this new reality. Her oncologist was recommending intrathecal chemotherapy, a treatment that involves placing a reservoir inside the brain in order to administer chemotherapy directly into the site where the tumor mass sits, in the hope of shrinking it. Jenny wanted my opinion on whether she should accept this therapy, but I was unfamiliar with the data on the procedure. I told her I would ask her oncologist about it, and we’d get back to her.
I called him, and after an exchange of pleasantries, I got down to the matter at hand. “Jenny was in today, and she mentioned that you had suggested intrathecal chemo for her brain metastases,” I said. “I told her I’d call to find out what you anticipated from this approach, since this is outside my expertise. What are you hoping we can accomplish with this treatment?”
After a brief pause, he spoke. “It won’t help her.”
I struggled for a response. “Would you want me to encourage her to go ahead with it anyway?” I asked, finally.
After another pause, this one longer and more awkward than the last, he said, “I don’t want Jenny to think I’m abandoning her.”
His comment struck me. For years I had tried and failed to understand why so many of my physician colleagues persisted in ordering tests, procedures, and treatments that seemed to provide no benefit to patients and even risked harming them. I didn’t buy the popular and cynical explanation: physicians do this for the money. It fails to acknowledge the care and commitment that these same physicians demonstrate toward their patients. Besides, Jenny’s oncologist would make no money from the intrathecal chemotherapy procedure. Instead, the impulse motivating him to order more tests and interventions was as an expression of his continued commitment to helping her.
It seemed that the only way Jenny’s oncologist knew to express his care and commitment for her was to order tests and interventions. He felt that to stop doing this was akin to abandoning her. His words transformed my understanding of what I’ve viewed as inexplicable behavior in the face of progressive and terminal illness.
It was ironic as well. The only way in which Jenny felt her oncologist had actually abandoned her, as she told me, was by his unwillingness to talk with her about what would happen when treatment stopped working.
How did Jenny and her oncologist come to see things so differently? Patients and families, especially those dealing with a progressive cancer, know that every life ends in death. They assume their doctors are trained and knowledgeable about end of life as well, and they assume that if the doctor recommends more tests and treatments, he thinks they will help in some way. Patients and families also assume that doctors will tell them when time is running out, what to expect, and how best to navigate these unknown and frightening waters.
But many doctors don’t do these things. Most are, in fact, completely untrained in these aspects of the human experience. Medical school and residency have traditionally provided little or no training on how to continue to care for patients when disease-modifying treatments no longer work. Physicians are trained to make diagnoses and to treat disease. Untrained in skills such as pain and symptom management, expert communication about what to expect in the future, and achievable goals for care, physicians do what we have been trained to do: order more tests, more procedures, more treatments, even when these things no longer help. Even when they no longer make sense.
So how do we fix this? Most policies to change physicians’ behaviors have focused on restructuring financial incentives. If we pay more (or less), the theory goes, for certain activities, physicians’ behaviors will change. The evidence correlating financial incentives and physicians’ behavior changes is mixed at best, however, and it is too early to judge their impact on patient care quality and costs.
Policies aimed at fundamental change in physicians’ behaviors will require more than financial incentives. Doctors care deeply about their patients, and most aim to express that care exactly as they were taught to express it. To change behavior, we must change the education and training of young physicians and the professional and clinical culture in which they practice. New doctors should learn about the management of symptoms such as pain, shortness of breath, fatigue, and depression, with intensive training on doctor-patient communication: how to relay bad news, how to stand with patients and their families until death, and how to help patients and families make the best use of their remaining time together. Armed with different training, Jenny’s oncologist might have been able to express his care and commitment in ways that better suited his patient’s needs.
The Affordable Care Act contains no provisions aimed at standardizing and overhauling undergraduate and graduate medical education. Graduate medical education (GME) funding from the Medicare trust funds is the main source of financial support for physician training after medical school. At least in theory, policy makers could tie such support to training priorities important to Medicare beneficiaries, such as basic palliative care skills and knowledge.
At present, however, government has few levers to use in influencing the content and quality of physician training. A 2010 report from the Medicare Payment Advisory Commission suggested linking Centers for Medicare and Medicaid Services support for GME funding to the achievement of medical competencies and standards aligned with payment for quality outcomes. Subsequently, a joint initiative by the Accreditation Council for Graduate Medical Education and the American Board of Internal Medicine developed 22 training milestones (knowledge, skills, attitudes) to ensure certain competencies for internal medicine residents, such as effective communication with patients and caregivers.
Today, virtually 100 percent of medical school–affiliated teaching hospitals have palliative care teams. Recent data show that the younger the physician, the higher his or her familiarity and comfort with palliative care. Resources for teaching these skills are widely available and could be standardized and scaled to reach all trainees. A working group of the American Academy of Hospice and Palliative Medicine is developing a set of competencies, milestones, and certain essential tasks physicians should know, called “Entrustable Professional Activities,” in palliative medicine for medical residents.
As we talked, Jenny’s oncologist had a change of mind about his treatment recommendation. “We’re not going to do that,” he told me. He called Jenny and told her that he didn’t think intrathecal chemotherapy would help her and that he thought it was time to involve hospice. Jenny gave up working, entered a hospice program, and settled in at home. There, her husband and daughter, along with the hospice team and I, took care of her.
Toward the end of her life, Jenny told me she wanted to thank her oncologist and say good-bye. Once she began receiving home hospice care, he had neither called nor visited. Her feelings of gratitude and connection to him had only grown as she prepared to die. With her permission, I called him.
“Jenny asked me to call you because she would love to see you,” I said.
“Isn’t she at home on hospice?” he said. “There’s nothing I can do for her now.”
Though he sounded slightly irritated by my call, I thought about how many such losses he had experienced in his oncology practice and how painful and distressing the prospect of Jenny’s death might feel to him. I persisted.
“She feels very attached and grateful to you,” I said. “She wants to thank you, and she wants to say good-bye. It would be great if you could stop by.”
He had not visited a patient at home before, but he agreed to go. She thanked him for his amazing care and for giving her so many good years after her lung cancer was diagnosed. After that visit, she lived only a few more days.
I am grateful to Jenny’s oncologist for reminding me that the commitment to care and help is behind physicians’ recommendations to their patients—recommendations firmly based on what they learned during their training. Both Jenny and her oncologist wanted to sustain their human connection, the relationship between doctor and patient that is at the heart of quality of care. With the right training and skills, doctors can honor that relationship throughout their patient’s experience of illness, even and especially when disease-focused treatment is no longer beneficial. Our patients, and their doctors, deserve no less.
Volume 33, Number 5. May 2014.
Editor’s Note: The pseudonym “Jenny” was used to protect the privacy of the patient and her family. “Jenny’s” oncologist was not named for privacy reasons as well.
The Fall
Aligning the Best Care with Standards of Care at the End of Life
When her mother is hurt, a health care executive finds that the standardized care she championed isn’t always appropriate.
Patricia Gabow
As the former CEO of Denver Health, a large safety-net health care system in Colorado, where I also served as chief medical officer for most of my 20-year tenure as CEO, I was a vigorous proponent of using the best available data to create standards of care. I embraced this as an essential pathway to reduce care variation and improve quality. Since a majority of our patients were members of minority communities, creating evidence-based standard care pathways for every person also seemed a way to reduce disparity.
Clearly, I was a believer in a standardized approach to care. But when my 94-year-old mother sustained a fall, my strong commitment to standards waned.
The belief in standards of care led Denver Health to an array of interventions to reduce care variation and improve quality. The first foray into this territory was almost two decades ago with the development of “clinical pathways,” or guided approaches for common medical problems. As many readers will remember, this approach was greeted by cries of “cookbook medicine,” reflecting, in part, physicians’ long history of autonomy and their belief that they always tried to do what was best for the patient. Without care standards, however, we see variability in the care of patients with similar clinical problems—and some of that care is suboptimal. Therefore, my response to the criticism was: “Better a cookbook recipe that worked than a trial-and-error approach that failed.”
Denver Health became an early adopter of computerized provider order entry with standard order sets for an array of conditions. For example, instead of relying on each doctor to remember best practices, a standard order set was created for diabetic ketoacidosis, an acute diabetic complication. This reduced patient time in the intensive care unit (ICU) and the hospital, and it reduced acute treatment complications.
Then, in 2005, Denver Health began implementing “Lean” principles and processes, built on the Japanese automaker Toyota’s focus on respect for people and continuous improvement to reduce waste and improve quality. We used Lean’s “Rapid Improvement Event” process to create standard approaches to care for interventions such as anticoagulation after surgery, to reduce the occurrence of postoperative deep venous thrombosis. These efforts and other similar interventions produced improved quality of care, with outcomes such as achieving blood pressure control in 70 percent of patients compared to a national average of about 50 percent and an observed-to-expected hospital mortality ratio of less than one, saving many lives.
We need standards of care. But when I found myself confronting an array of standards in the emergency department with my mother, I began to see that we need to adapt standards for the patient population and the individual patient being treated.
My mother, Terese, was the daughter of an immigrant father who sent his two sons and my mother to college during the Depression, enabling all of them to become schoolteachers. My mother’s first husband (my father) was killed in World War II, and she remarried a fellow teacher a decade later. They spent many years teaching in rural Pennsylvania, where they were beloved by generations of students. Last Christmas my mother received 150 cards, some from students she had taught 60 years ago, reflecting on the difference she had made in their lives.
About 15 years ago my mother began to develop dementia. My stepfather was a devoted caregiver, allowing them to live independently on their tree-filled acre of land in St. Petersburg, Pennsylvania. When he died suddenly almost five years ago, it was not feasible for my mother to live alone, 2,000 miles from me, her only child. So we moved her to Denver. Given the extent of her memory loss and her tendency to wander, she needed to live in a dedicated memory unit that provided for the special needs of dementia patients with the presence of 24-hour caregivers. After an initial bumpy adjustment to my stepfather’s death and the move, she settled in well. The caregivers and even family members of other residents loved her. She told everyone she loved them, hugged them, and labeled most of them the “teacher’s pet,” continuing to manifest the true generosity of spirit that made her so beloved by her students and earned her the nickname of “Mother Teresa.”
Over the ensuing five years her dementia slowly worsened, and by the late summer of 2014 her conversation frequently became a “word salad.” She started eating less, often slept in a chair in the memory unit’s living room, and was less steady on her feet. My mother remained happy and kind but could no longer follow commands or understand the reason for anything uncomfortable, including the simplest procedures. Even a blood pressure measurement caused dismay.
My mother and I continued our weekly ritual of going to Saturday evening church service followed by dinner. On the night of Saturday, August 29, 2014, after services and dinner, I was getting ready to drive her to her home. We walked out of my front door and down the one step to the patio. Thinking my mother was stable, I turned to lock the door. The next sound I heard was the crack of her head hitting the flagstone, and my next vision was of her sprawled out on the patio—a sound and sight locked in my mind forever.
She did not lose consciousness and had no obvious broken bones, but she had a large cut on her arm, a small cut above her eye, a rapidly developing black-and-blue mark on her head, and a black eye. I called out to my husband, who was in the house, and we tried to get her up. But even with her small frame and my husband’s weight-lifting prowess, we could not. So her encounter with a health system’s standards of care began.
Having been at Denver Health for 40 years, including my two decades as CEO, I knew almost all the physicians and many of the other employees. I called Denver Health’s emergency services director, asking if an ambulance could take my mother to her residence. I was hoping to bypass the standard for the ambulances to deliver patients only to a hospital emergency department (ED), which I thought would be a strange and troubling place for her. As I could not assess her injury, he strongly recommended we bring her to the ED, which we reluctantly did.
The paramedics arrived promptly and, following standard procedure for a head trauma, wanted to put her in a collar. I knew she wouldn’t tolerate that and asked them not to do it. Instead, they expertly loaded her onto the stretcher with a scoop, keeping her head stable. Arriving at the ED, we were taken into a trauma room and greeted by the nurse and attending physician. I explained my mother’s condition and her inability to tolerate even the simplest intervention. I knew my mother well. Given her strong religious belief in a heavenly home and previous conversations with her and my stepfather regarding end-of-life care, I told her health care team that her goals were comfort and peace, and a prompt return to familiar surroundings. I asked that they not place an intravenous line, which would be used for fluid or medication administration if needed, or to draw blood for laboratory tests. Then, after the initial monitor readings, I asked that they turn the monitor off, since no reading or alarm was supposed to elicit a response, given that she was a “do not resuscitate” patient.
Although my requests did not comply with the standard approach for a patient who has sustained a fall and was brought to the ED by ambulance, the team understood my concerns and agreed that a nonstandard approach was appropriate. Given her head trauma, the next standard step would have been to perform a computed tomography (CT) scan. This would have been yet another unnecessary step, as there would be no finding that would lead to my agreeing to a neurosurgical procedure on my elderly mother. Again, the team agreed to deviate from the standard.
By this time, my mother said her wrist hurt. The attending recommended obtaining wrist X-rays, revealing three nondisplaced breaks, and the orthopedic service team was called. The ED attending turned her attention to the large laceration on my mother’s forearm. She said it would be easier to care for and more comfortable for my mother if it was sutured. This seemed reasonable, and the physician proceeded to inject the wound with a local anesthetic using a small needle. “Ouch,” my mom cried out. “Why are you doing that?” She asked her to stop. But the local anesthetic quickly took effect, and the attending was able to close the wound with eleven sutures and no further discomfort to my mother. The orthopedic service recommended a plaster splint for her arm rather than surgery, a standard of care that I could accept.
By 12:30 a.m. on Sunday morning, about four hours after entering the ED, we were ready to go home—almost. Although my mother was not complaining of any pain in her pelvis, hips, or legs, the ED attending said that the standard of care would be to get her out of bed and see her walk. But my mother was exhausted by now, and I asked that the attending not get her up. She reluctantly agreed. In retrospect, I should have accepted this standard. Back at her residence, my mother would not put weight on her right leg and was complaining of hip pain when she moved.
This resulted in another trip to the ED and a right hip X-ray, which revealed a classic hip fracture (so-called “valgus-impacted femoral neck fracture” in orthopedic terminology). I was entering more difficult terrain in my efforts to honor her goals for care. The orthopedic service explained that the standard of care for this injury was a surgical procedure that would fix the fracture by pinning the hip with three screws.
On the one hand, I felt uncomfortable and a little anxious about potentially denying her appropriate care, especially since she fell when she was on my watch. On the other hand, I did not believe this standard of care was ideal for a 94-year-old with severe dementia. I tried to visualize the first postoperative day in the ICU for her, the strange surroundings filled with constant activity, so unlike the quiet environment of her memory unit. I pictured the intravenous line, which she would try to take out, leading to soft restraints that she would also struggle to get out of. Then sedation and a downward spiral. Every part of this would seem like torture to her—and I would have to watch this torture. Given her lack of physical activity and the fracture’s stability, any other option, even including a wheelchair, would seem more acceptable for her.
I asked the resident to imagine the ICU stay, too, and how it was misaligned with our goals for comfort and peace. I wanted to take my mother back to her home. Yet this was too radical a deviation from the standard of care for the resident’s comfort. The chief of orthopedics was out of town, but I called him up. I knew him well, had great respect for him, and he had recently operated on my healthier 89-year-old mother-in-law’s broken hip with a great outcome. I explained my desire to avoid surgery in my mother’s circumstance. The chief of orthopedics had trained in Europe, where the standards of care would include nonoperative management of this stable, nondisplaced fracture in someone with dementia and her age, and he and the team agreed to the approach.
We went home with only Tylenol for pain, the goal of starting physical therapy in several days, and a simple Velcro-attached plastic splint for her arm. Somehow, although none of us could figure it out, she had managed to remove the previous plaster splint—no doubt a whole night’s work for her.
Within a week, my mother was walking 30 feet with the help of a physical therapist. The therapist even had her pedaling a stationary bike—quite surprising since my mother had never ridden a bike in her life. She had no pain. Her primary care doctor’s physician assistant removed her stitches, and follow-up X-rays were taken at her residence, revealing that the wrist and hip fractures were stable. Her orthopedic surgeon released her from his care with no restrictions or additional X-rays needed.
While the motivation for my decisions was my mother’s comfort, the decisions had significant cost implications for Medicare and her supplemental insurance. At a minimum, the total charge for the likely surgical procedure, an expected three-day stay in the ICU, and several other days in the hospital would have been approximately $156,000. While the amount paid to the hospital would be considerably less than the charges, the cost would still be substantial. Additionally, there may have been a costly stay in a rehabilitation facility. More importantly, these expenditures would have been of no value to my mother and, in fact, would have reduced the quality of the remaining days of her life.
The physical and mental downward course for my mother that had begun several months before the fall continued, and a month after the fall, we enrolled her in home hospice at her residence, providing additional care and equipment, such as a hospital bed. By October 21, she did not want to get out of bed, and by October 24, it was clear her earthly days were numbered. She died on Sunday, October 26, in her sunny, plant-filled little apartment room in the memory unit, with my husband and me holding her hand, her iPod headphones in her ears, listening to Perry Como sing “Ave Maria,” her favorite song.
To my mind, deviating from the standard approaches to care was clearly the best care for my mother. It gave her two more months of a calm and happy life and a peaceful death. I still believe in standards of care. For many patients, they provide protection from unwarranted and possibly deleterious variation. But my perspective has shifted a bit. Now I ask myself different questions. Could we adapt standards of care, particularly at the end of life, to be more flexible? Could there be branch points reflecting a patient’s age, overall condition, and most of all their desires and true best interest?
I also wonder, was it possible for me to deviate from the standards of care, opting for a less invasive approach, only because I had been the CEO of the health system? I was a physician who knew the caregivers, and none of the physicians at Denver Health were getting paid more to do more. Was it possible to avoid surgery in the last months of my mother’s life only because the director of orthopedics had had training that embraced more flexible standards? I suspect that had I not been a physician, I might not have challenged the standards. Similarly, if we had found ourselves in an unknown health system with providers who had been trained differently, choosing this path would have been more difficult, perhaps impossible. They might not have believed I was knowledgeable enough to weigh the options. They might have feared later accusations of malpractice.
I hope that I am wrong, but if I am right about the current state of health care, I hope that our health policies and our health care system will evolve to keep what is good about standards of care in reducing inappropriate variability, while learning to align them with patients’ goals and values, particularly at the end of life. This change will require better public education of and increased dialogue about individuals’ goals at the end of life.
This shift is beginning, as reflected by the popularity of Atul Gawande’s latest book, Being Mortal: Medicine and What Matters in the End. Gawande gives a compelling presentation of what it means to strive for “good days” rather than for the often unobtainable potential of more days, no matter their quality. He describes the need for physician training to assist patients and their families in making such decisions. With wider availability of decision support tools for patients and families, more and more physicians and patients are embracing shared decision-making. A decision support tool for patients and families in the management of hip fractures in the elderly would be valuable, especially considering that there are almost 260,000 hospital admissions for hip fractures in people older than age 65 every year in the United States. The one-year mortality for these patients is about 20 percent.
The movement away from fee-for-service payment should better align physicians’ choices with the choices of those patients and families who desire fewer invasive procedures, although physicians and the health care systems may also need better assurances against malpractice when shifting standards of care to meet patient circumstances. Our policies and payments must align better with out-of-hospital care, too, including more on-site care in assisted living facilities and flexibility in hospice services. Had my mother been on hospice care when she sustained her hip fracture, for instance, the routine hospice service would not have included physical therapy, although this significantly improved the quality of her final days and likely lowered overall costs. Today, these steps require administrative and medical director assessment and approval. If we begin to make these changes, we can better align the standards of care with the best care, especially at the end of life.
Volume 34, Number 5. May 2015.
Getting It Right at the End of Life
With the help of a palliative care team, the author’s terminally ill mother dies on her own terms.
Dina Keller Moss
At my mother’s recent memorial service, lots of people asked to speak. We got to hear from friends and family who had known her from each of the eight decades of her vibrant life. While the details varied, there were important consistencies across all of the wonderful memories that were shared: her great warmth, infinite curiosity, pioneering spirit, and utter inability to tell a joke. But most of all during the formal remarks and informal conversations that followed, everyone in the standing-room-only crowd recalled my mother’s fierce independence and drive to do things “her way.” And nowhere was this drive better demonstrated than in her determination to go out on her own terms. For this she had needed my help, and I very nearly blew it.
When—just a few days after her eighty-ninth birthday—my mother was diagnosed with a colorectal mass (we would later learn it was cancerous), she restated to me what I long knew to be her fervent wish: no treatment of any kind beyond symptom relief. NO invasive procedures, NO chemo or radiation, NO life-prolonging treatments. NONE! She wanted only one thing: to spend the rest of her days, however many or few there were to be, in her apartment in her lively and supportive community. My job was simply to help make sure her wishes were honored. As it turned out, this was not so simple at all. Just days after the initial diagnosis, despite my mother’s long-standing, clearly stated, and just-repeated wish, I found myself reluctantly making an appointment for a preoperative examination with a surgeon for a procedure to reroute her intestine around the mass.
How had we ever come to even consider this?
For as long as I could remember, my mother had made it clear that she did not value longevity for longevity’s sake. Her greatest fear had always been living past the point when she felt good about being alive. “Can you believe it?” a friend or relative would sometimes exclaim in delight about a markedly diminished elderly relation. “She just celebrated her ninety-sixth birthday!” In response, my mother would shudder in dismay and reply that she hoped that she would not face a similar fate.
Thus, from the instant she learned about the colorectal mass, my mother told every one of the endless series of doctors who paraded by her bedside that she was really OK with the situation, as long as she could opt to do nothing about it and have a peaceful end when the time came. Though increasingly weak as the days wore on, she remained clearheaded and articulate. And when her voice faltered slightly, or when she got tired of repeating herself, I spoke up for her, and she would nod vigorously in agreement.
Nonetheless, on the fourth day in the hospital, a surgeon arrived at my mother’s bedside with a different agenda: to discuss the risks and benefits of two surgical options for addressing the threat posed by the mass. One option was to surgically remove the mass entirely, while a second option involved rerouting the intestine around the mass, which would otherwise be left intact. Since the mass was growing slowly, the surgeon explained, and since there was no sign of cancer anywhere else, my mother was a good candidate for the second, more limited surgery, which was less invasive and promised a speedier recovery.
In fact, the surgeon confidently pronounced my very frail mother an “excellent” candidate for this surgery and predicted a relatively insignificant recovery time with only minimal pain and discomfort. But—oh yes, there was one more thing worth mentioning: the “limited option” involved a colostomy. A hole would be created surgically in my mother’s belly, out of which stool would exit into a pouch. The pouch would need to be emptied regularly (once a day or so) to avoid leakage. My mother would need to find a well-fitting pouch to minimize the risks of skin irritation, the extent of odor, and the possibility of leakage. And she’d need to learn to change the bag (it takes practice), adjust her already limited diet, and perform the necessary skin care. Besides this, there would be anxiety about whether the bag would bulge visibly or, worse yet, soil her clothing. Yet the surgeon was certain that with the new technologies and products for colostomies that were available, my mother would adjust in no time.
When I asked what would happen if my mother declined surgery altogether, the surgeon provided a chilling answer. Doing nothing, he told us, would cause her colon to rupture, followed by sepsis. This would be accompanied by acute and possibly prolonged abdominal discomfort and eventually excruciating pain. He painted a graphic picture of what would be happening inside her body to cause this pain. It would be a gruesome way to die. No way would he ever let his mother suffer through that, the surgeon pronounced. His face suggested he was horrified to think that we might even consider it.
In the face of the surgeon’s specialized knowledge and the high degree of confidence he projected, our certainty about my mother’s long-abiding wish waivered. I, in particular, struggled to reconcile what this expert was telling us with my admittedly vague understanding of the alternative: palliative care.
The surgeon left the room, and my mother began to weep silently. I could not remember when I had last seen her cry, but it had been decades at least. Her hope of a dignified death had been dashed, and she found herself facing a choice between excruciating pain or surgery with a colostomy, with all of the attendant ramifications. She clearly feared she might end up one of the “lucky ones” who “get to live”—in an increasingly physically and cognitively feeble state—to 96!
I reluctantly scheduled a pre-op appointment for later that month, but I also reached out to a close friend who specializes in research on patient engagement. She encouraged me to probe more deeply the surgeon’s predictions and assertions about the likely impacts of undergoing surgery, as well as the consequences of declining it. What exactly did a “relatively easy” recovery mean for an 89-year-old woman who weighed only 118 pounds? How would a colostomy actually affect the quality of her life? Could the pain of a ruptured colon be effectively controlled by a clinician who specialized in palliative care? I sought answers to those questions.
I started by investigating the surgeon’s assurances regarding the simple-to-use and odor-free technologies that were available for colostomy patients, since I knew that this would be of particular concern to my mother. We faced the added complication of her Parkinsonism (a condition related to Parkinson’s disease that, in my mother’s case, left her unable to stand or walk), for which she needed the services of a full-time home attendant.
I called M. R., one of my mother’s former aides, who knew her needs, abilities, limitations, and sensitivities at least as well as I did. I trusted M. R. to give me straight answers. I asked if she had had any experience with the colostomy paraphernalia and if she thought my mother would be able to change the bags as easily as the surgeon had suggested. If she couldn’t, were home attendants allowed to assist with this activity? God forbid that my mother would have to end up in a nursing home just because of a colostomy.
M. R. assured me that Mom would most likely be able to change the bags herself, though she offered to check on whether an aide would be permitted to help. But then she got to the more central issue: “You know your mother,” she told me. “You know how much she cares about personal hygiene. She will not like the smell. Even if it is not a strong smell, she will smell it. They will tell you there is no smell, but I will tell you your mother will smell it. It will bother her. A lot.”
M. R. went on to describe having cared for an outgoing and sociable retired lawyer who became so self-conscious following his colostomy that he had become a recluse.
For my mother, this would be a truly catastrophic blow. Formerly very active and outgoing, she had already lost a great deal, including her mobility and much of her independence, to Parkinsonism five years earlier. Nonetheless, she remained surrounded by a large cadre of devoted and lively friends—some of whom she had known for decades. When I visited her in the unique Upper West Side community in Manhattan that had been her home for 50 years, we would sit on the bench in front of her building and, without exception, an average of three or four people per hour would stop to sit and chat. Her apartment door was never locked, so friends and neighbors were constantly popping in to play Scrabble, watch a film, discuss a book, or bemoan the deteriorating state of the world.
Over the previous five years, my mother had already begun to feel that her life had been irremediably diminished. Aside from the Parkinsonism, she was growing extremely frustrated with the continuous, if gradual, cognitive decline associated with “normal aging” and the impact it was having on her memory and her ability to use her computer, cell phone, television, and other mainstays of modern life. The prospect of social isolation or other additional losses was more than she should have been expected to bear.
This bleak outlook strengthened my resolve to learn more about whether palliative care could be effective against the specific risks of “doing nothing” as described by the surgeon. The following morning, as my mother was preparing to be discharged from the hospital, a doctor arrived to check her status. We mentioned that she was happy to be headed home and that our next step would be to identify a palliative care specialist who might be able to tell us whether and to what degree the dire consequences of declining surgery could be mitigated.
As luck would have it, the doctor told us that he was trained in palliative care. He immediately validated my mother’s decision to reject treatment and offered his unequivocal assurance that she would not need to face an excruciating end. He explained that he could immediately sign her up for home-based hospice, which would include palliative care. This was the first that we had heard of this program.
Looking back, I can’t say whether the surgeon who advised my mother was intentionally engaging in scare tactics. He probably wasn’t. Yet his highly subjective, rosy picture of life after surgery and his ghastly view of the alternative were based on his own values, fears, and preferences rather than those expressed by my mother, an elderly woman who above all else feared a longer and increasingly limited existence. Moreover, he was either ignoring, or ignorant of, the potential mitigation of pain and suffering that could be offered through effective palliative care.
Of course, at that moment we were equally ignorant about what palliative care entailed and how effective it could be for those who decline other treatments.
I’ll never understand why the option of hospice with palliative care was not presented to us early in my mother’s hospital stay, given her very clear statements of her wishes when she was first told of the existence of the mass. It was only when we finally said the seemingly magic words—“we would like to confer with a palliative care doctor”—that we learned that my mother’s wishes could in fact be granted. I shudder to think about what might happen to people who are less persistent or do not know what to ask.
I later learned that this omission was not merely an unfortunate oversight but a potential failure to comply with Chapter 331 of the Laws of 2010 in New York State, commonly known as the Palliative Care Information Act. This law requires that all patients facing an illness or condition that is reasonably expected to cause death within six months be given counseling concerning palliative care and end-of-life options. The New York State Department of Health webpage devoted to the act explains that the purpose of the law is to “ensure that patients are fully informed of the options available to them … so that they are empowered to make choices consistent with their goals for care, and wishes and beliefs, and to optimize their quality of life.”
The law states that it is the responsibility of the “attending health care practitioner” to provide the necessary information and counseling. In my mother’s case, I do not know which of the countless doctors who checked in throughout her hospital stay met that description. Clearly that aspect of the law has to be clarified to produce the desired effect. Perhaps what’s needed is the equivalent of a Miranda warning for patients facing terminal illness: you are not required to accept treatment, and if you opt to decline it, a palliative care doctor will be provided for you who will ensure that your pain is fully and effectively managed. But such a requirement would be just the start.
For a law like New York’s to be truly effective, hospitals need well-staffed palliative care departments with team members who routinely visit seriously ill patients and who can systematically present palliative care options, both as part of and distinct from hospice. In addition, physicians who treat patients with potentially terminal, or even significantly life-limiting, diagnoses should understand palliative care treatment well enough to be able to discuss it comfortably and meaningfully. Training in medical school and through organizations such as the Center to Advance Palliative Care can help achieve this goal. Otherwise, there will always be situations like the one my mother and I faced, when a patient’s choices are inadvertently circumscribed by the limitations of one particular specialist’s knowledge, assumptions, or beliefs.
It might not be easy to get practitioners to accept a patient’s request for palliative care as a rational and legitimate alternative to more aggressive treatment, however. A colleague who is researching informed consent recently told me that a survey (not yet published) at four hospitals showed that 45 percent of doctors believed that they are in a better position than patients to decide what their patients need.
My mother would have had some choice words for those doctors. She would have pointed to the last six months of her life as evidence of the soundness of her choice. Spared the aftermath of a surgery she did not want, my mother ate and felt better than she had in months. Everyone commented on how well she looked and how upbeat she seemed. She took in several museums and a show. We strolled through Riverside and Central Parks and spent a glorious day at the New York Botanical Garden. She enjoyed visits from friends and family members, including some whom she had not seen in many years. Capping it all was a show of her beautiful watercolors, attended by over a hundred neighbors, friends, and relatives. It was entirely fitting that she chose to donate the proceeds from the sale of her paintings that day to Morningside Retirement and Health Services, a nonprofit organization associated with her co-op whose services had proved invaluable to her as she “aged in place.”
Throughout this period, my mother’s outstanding hospice team delivered on the promise of compassionate, effective palliative care. The team was careful to include her, her aides, and me in all discussions of her care. They told us what to expect and educated us about what developments might signal the need for a change in regimens. This was certainly not “doing nothing.” Palliative care in my mother’s case involved active monitoring and managing of her diet, digestion, and medications to maximize her comfort and quality of life. My mother felt engaged, respected, and supported—and she experienced virtually no physical pain.
About two weeks before her death, my mother began to feel very weak. She became increasingly frail and showed signs of anxiety. She stayed in bed for a couple of days, something entirely new for her. She called me a couple of times to tell me she was certain that “this was the end.” She stopped being interested in visitors and even in phone calls. Then one day she experienced an extremely sharp pain as her home attendant was transferring her from a chair to her bed. The hospice team provided medication that eliminated both her anxiety and the pain.
A few evenings later, I woke her from a nap to ask her if she wanted dinner. She said she thought she might, so I gave her a dose of morphine in anticipation of moving her to the dinner table in another half hour. When I went to get her, she demurred: “Why would I want to move anywhere when I am so comfortable right here?” Those were her last words. She fell back asleep, and sometime that night she lost consciousness. Over the following two and a half days, in keeping with her wishes, she was heavily medicated as she slowly slipped away.
The evening before she drew her last breath, her nurse stopped in, gently stroked her brow, and spoke to her. Mom showed no signs of hearing her. Her nurse assured us that my mother was in no pain and encouraged me to keep speaking to her, which of course I did. I told her how much I loved her, and that I was truly grateful that she had been so clear about what she wanted. For it was because of the clarity of her wishes, and her steadfast and openly expressed desire to see them honored, that together we were ultimately able to get it right.
Volume 36, Number 7. July 2017.
Editor’s Note: The opinions expressed in this article are the author’s own and do not reflect the views of the Agency for Healthcare Research and Quality, the Department of Health and Human Services, or the US government.
The Evolving Moral Landscape of Palliative Care
Deactivating a patient’s medical device provides a “good” death, which reflects how perspectives on hastening death have changed.
Myrick C. Shinall
When Mr. S died, it was unusual enough to become the subject of our hospital’s monthly ethics conference. After all, it was not often that we deactivated a ventricular assist device (or VAD) in a patient who was awake, alert, and not obviously dying. As I was one of the physicians managing the palliative care unit where Mr. S died, the attendees at the conference were eager to hear my perspective. I could tell that the conference organizers expected members of the medical team involved in his care to describe a sense of moral distress and inner conflict in complying with the patient’s request to deactivate the VAD. It turned out, though, that the most interesting part about caring for Mr. S was not the moral distress his decision caused, but the lack of it. As I told the conference, deactivating the VAD was not even the most morally distressing thing I did that day.
Several months before I met Mr. S, his heart failure had entered its final downward spiral. His heart’s ineffective pumping and his body’s response to it caused more damage to the organ, leading to even less effective pumping and even more damage. It was a vicious cycle that would inevitably lead to his death. He was not eligible for a heart transplant, so he had sought help in the form of a VAD, a mechanical device that served as an auxiliary pump to help keep his blood circulating. It would extend his life and allow him to return home. But without the possibility of a heart transplant, the device would not save him. Eventually even the VAD would not be able to keep his blood moving.
The VAD was meant not only to buy Mr. S more time but also to improve the time he had. The intent was to provide enough pumping power to help him overcome the debilitating effects of heart failure. Unfortunately, the device only prolonged his time in severe heart failure. The VAD and his heart together could get barely enough oxygenated blood to his tissues, so almost any movement was like exercising at maximum capacity. The heart failure also caused his body to retain fluid, which weighed down his limbs and accumulated in his lungs—making it even harder to move and breathe. He spent months suffocating on the fluid his body retained.
Just sitting up was a struggle. Sometimes at home he would lie down on the floor to catch his breath and be unable to get up, even with his wife’s help. All she could do was put a blanket on him and hope that by the next morning, he would be rested enough to stand. If not, she would have to call an ambulance to take him to the emergency room. Several times he was admitted to the hospital to receive continuous infusions of medications to make his heart squeeze just a little bit harder, alongside powerful intravenous diuretics to help his body get rid of the extra fluid. The extra life-span the VAD had given him was completely consumed by managing his severe heart failure.
Mr. S knew that the VAD was failing to achieve its purpose, as did his wife, the rest of his family, and the heart failure team that managed him, admission after admission, and kept tabs on him during his increasingly brief outpatient intervals. So it was not a surprise when, during one admission, he decided he’d had enough and asked that the VAD be deactivated. The heart failure team asked our palliative care and ethics teams to consult before acting on this request. It was clear to everyone that he had the capacity to make this request and that discontinuing the VAD was appropriate. He was transferred to our palliative care unit late one afternoon as we prepared to honor his request.
I met Mr. S the next morning on rounds. He was sitting up in bed, looking comfortable and talking with his wife, who sat at his bedside. He looked like an average 65-year-old man you might see on the street, not particularly ill-appearing, until you looked at the IV pole with its continuous infusions of diuretics and vasoactive medications to make his heart pump or the lines leading out from his torso to the controller and battery pack of the VAD. He was talkative and seemed rather cheerful. His wife was harder to read. She looked weary, and there was sadness in her eyes, but no other hint of sorrow in her voice or demeanor.
I introduced myself and began to get to know Mr. S and his wife. They were much more comfortable in the large, airy room brightened by sunlight in the palliative care unit than they had been in the confines of the windowless ICU bay. Without the constant beeping of monitors and bustle of staff, they had both gotten a better night’s sleep than they had in a long while. We talked about the family’s plans, and I found out that Mr. S’s son was traveling to be with him and could not get there until the next day. Our plan was to wait for the son’s arrival and then deactivate the VAD. I performed a physical exam, which was unremarkable except for the continuous hum I heard in my stethoscope that came from his VAD and that obscured the faint lub-dub of his weakened heart. At that point he looked healthier than any of the other patients in the unit.
Mr. S spent the rest of the day like any other relatively stable patient in the hospital: watching TV, visiting with his wife, and talking with the nurses. When his nurse, his other doctors, and I saw him on rounds the next day, we discussed how the day would unfold. He told us he planned to die that day, speaking as nonchalantly as if he were telling us what he was doing for lunch. His wife had tremendous equanimity about the plan for the day as well. There was a note of relief in her voice. They had moved beyond the point of sadness and were enjoying the remaining time they had together. We counseled them both about the likely course of events after we deactivated the VAD and turned off the intravenous drips: Mr. S would slip into unconsciousness within the next several minutes and die a few minutes after that. We did not expect pain or other bothersome symptoms, but we had medicines ready to administer just in case. We’d give him as much time as he wanted after his son arrived, and he’d let us know when to call the heart failure team to turn the device off. With everyone in agreement, we left him in the care of his bedside nurse and his wife.
After I left Mr. S, I got busy with the rest of the work for the day. There were two patients on ventilators with unsurvivable injuries whom I needed to extubate, and a few other patients who were dying as well. I would need to counsel all of their families about what to expect and monitor the patients for adequate symptom control. I would have to wrestle with the dilemma of whether treating some of the normal but harder-to-watch aspects of dying (the gurgling, fast breathing, and involuntary movements, for instance) was benefiting my patients or simply making their deaths more palatable to their families. I would have to justify to myself that the doses of the medicines I was giving were really for symptom control and not just to hurry the patients’ deaths, at the same time as I justified to myself that I had treated the symptoms aggressively enough. As a palliative care doctor, I always feel somehow judged by whether my patients have a good death, which usually means a death that is not too unsettling to the families and nurses. I have to balance this desire to make the death aesthetically pleasing with what I know is my actual duty—to control the patient’s symptoms and provide as much comfort and dignity as the disease process allows.
Those balancing acts constitute the moral conflicts that color most of my days in the palliative care unit. Mr. S’s case barely registered amid the other care I was giving. I had no worries in his case about symptom control, treating for the family’s benefit rather than the patient’s, or making the death a good one. Just as predicted, shortly after the VAD was deactivated, Mr. S slipped painlessly and easily into unconsciousness, and his heart stopped beating shortly thereafter. There was no drama, there was no conflict, and there was no suffering. It was odd only in that it was so easy. It was as if Mr. S had an off switch, and we just flipped it.
I was not alone in feeling this way. His bedside nurse told me that it felt weird to have a patient die who was awake and appeared normal while on life support, yet nothing had felt wrong about deactivating the VAD and turning off the drips. The heart failure team said the same thing. It was an unusual case, but not a troubling one.
Our shared lack of distress in discontinuing life support on this patient is truly astounding given what dilemmas discontinuing life support has caused even in my lifetime. Shortly before I was born, the family of Karen Ann Quinlan, a young adult patient in a persistent vegetative state, had to fight the State of New Jersey to have her ventilator discontinued. It was not just New Jersey that objected: many members of the medical profession held terminal extubation (the withdrawal of ventilator support from patients who will not survive without it) to be morally equivalent to murder. A few years later, Kathleen Farrell, who suffered from amyotrophic lateral sclerosis and was competent to make medical decisions, had to seek injunctive relief to be allowed to be disconnected from her ventilator. She died while still on ventilator support as her case was making its way through the courts.
When I was in elementary school, the family of Nancy Cruzan fought the State of Missouri all the way to the US Supreme Court to discontinue the artificial feeding and hydration that they felt Nancy, in a persistent vegetative state following a car accident, would not have wanted. Although the Cruzans failed to convince the Supreme Court to strike down the burden of proof that Missouri demanded they meet in demonstrating that Nancy would have wanted to die, they eventually were able to have the use of her feeding tube discontinued. The attention attracted by the case led to passage of the Patient Self-Determination Act of 1990, which reinforced patients’ rights to refuse or discontinue life-prolonging therapy. Now, discontinuing artificial ventilation or nutrition is part of my routine practice as a palliative care physician.
Over time, life-supporting technologies have advanced to include permanent implantable devices such as pacemakers and ventricular assist devices, and health care providers have struggled with the moral dimensions of deactivating those machines as well, which now seem a part of patients’ bodies. The culture of medicine, designed to prolong life at all costs, had trouble accounting for the need to stop at some point, and providers acutely felt the clash between honoring a patient’s wishes and their own discomfort in stopping life support, which at times felt like murder.
Looking back, it seems strange that health care providers would ever have been so troubled by things that seem so routine to me now. By the time my medical training took place, famous cases such as Cruzan’s had established judicial precedents and generated public awareness, which led to policies that encouraged and empowered patients to make known their wishes about withholding or discontinuing life support and mandated that health care providers abide by them. Advance directives were popularized, physicians began to be reimbursed for having end-of-life discussions, and the specialty of palliative care was developed and formally recognized.
Although these policy changes have hardly made the medical world embrace the concept of limiting or withdrawing medically inappropriate care, they have made such limitation or withdrawal a part of accepted medical practice. The ethical landscape of medicine that I entered was very different than that in which the previous generation of physicians found themselves at the completion of their training. My sense of propriety in end-of-life care is in many ways the product of the policy decisions of the past decades. My comfort in doing things that many compassionate, dedicated physicians found morally repugnant within my lifetime speaks to the power of policy to shape our moral horizons. Policies are not just ways of enacting our moral commitments—they also form those commitments.
The recognition of how much my moral commitments have been shaped by the policy environment in which I trained brings me to the one aspect of caring for Mr. S that troubles me. Compared with the other patients I cared for that day, Mr. S experienced death without the usual clinical or moral ambiguities because he had an off switch that we could just flip. The truth is, every patient I care for has an off switch—the respiratory center in the brain stem—and I know the combination of drugs that will flip that switch.
Despite my best efforts as a palliative care physician, I often fail to make the deaths of my patients as controlled and painless as Mr. S’s. While I wait for their fatal diseases to take their course, I try to alleviate my patients’ suffering, but I frequently cannot eliminate it. Many patients and families long for a death similar to Mr. S’s, for the quick, controlled resolution to suffering from a disease that will inevitably end their lives anyway. By a quirk of his medical condition, Mr. S had an off switch that our team felt legally and ethically comfortable flipping. Many other patients long for such control over their dying but do not have a device we can deactivate. Witnessing Mr. S’s death makes it hard for me to gainsay the advocates of physician aid in dying, who push for policy changes that will make deaths like Mr. S’s available for many more people.
Of course, things are never as simple as that. Not every patient with end-stage illness can act as autonomously as Mr. S did, and there are valid concerns that physician-aided dying could be inflicted on people who might not actually want it. Additionally, the course of disease and the chance of recovery might not be as clear-cut in other cases as they were for Mr. S, which complicates decisions about ending a life. Moreover, patients may feel compelled to end their lives because of financial considerations in paying for ongoing care. Nevertheless, we have developed safeguards that help us feel justified in withdrawing or withholding life-prolonging care where we face these same potential concerns about a patient’s ability to choose, the uncertainty of recovery, and the extent to which financial concerns are driving treatment decisions.
Yet I feel deeply uncomfortable with the idea of intentionally hastening a patient’s death, despite my comfort in withdrawing life-supporting treatment. I cannot help but wonder if my moral disquietude is simply a reflection of a policy environment that insufficiently protects the autonomy of patients with terminal diseases. That policy environment is in the process of changing: six states and the District of Columbia now have legal mechanisms for physician-aided dying, and perhaps more jurisdictions will legalize it in the future. Will the next generation of physicians look back on my squeamishness with a perplexity similar to that with which I look back on those who struggled with the idea of discontinuing mechanical ventilation? At the same time, I believe that there must exist a stable moral framework to guide our actions, regardless of the environment in which we train, and I cannot bring myself to believe that my discomfort with hastening death by introducing rather than removing treatment is purely a result of that environment. So maybe my unease is well founded. Perhaps it is always wrong to kill patients, as the overwhelming majority of the medical field has held until very recently. If that is the case, will policies that enable physician aid in dying blind future physicians to this moral reality? Equally, have the policy changes of the past decades blinded me to the moral realities that the prior generation of physicians saw more clearly? Mr. S’s case shows why these policy debates are so intense, for they are debates not only about what we as physicians and patients can do but also about who we are and what we will become.
Volume 37, Number 4. April 2018.
Necessary Steps
How Health Care Fails Older Patients, and How It Can Be Done Better
A chance meeting between an octogenarian and a geriatrician shows how the US health system focuses on medical care at the expense of older adults’ well-being.
Louise Aronson
The clinic was in a dilapidated old building located down the hill from a recently renovated hospital, yet the entryway retained a worn grandeur. Tapering, semicircular walls extended like welcoming arms from either side of the sliding glass doors, and a half moon of sidewalk stretched to the quiet side street.
That’s where I first saw her. She stood at the curb with her cane propped on her walker squinting toward the nearby boulevard. It must have been about four thirty in the afternoon then, as I’d asked for the last appointment of the day with the podiatrist doing my pre-op for a minor foot surgery and I was about to be late. The woman was clearly well into her 80s, with a confident demeanor and clothes and hair that revealed an attention to appearance and at least a middle-class existence. She had a cell phone in one hand and seemed to be waiting for a ride.
This was just before Christmas, so when I came back out after five o’clock, night had fallen. But for her tan winter coat and bright scarf, I might have missed her standing in the shadows leaning against the curved wall. She still held the cell phone, but now her shoulders were slumped and her hair disheveled by the increasingly cold evening breeze.
I hesitated. On one side of San Francisco, my elderly mother needed computer help. On the other, our dog needed a walk, dinner had to be cooked, and several hours of patient notes and work emails required my attention.
I asked if she was OK. When she answered yes, I waited. She looked at the ground, lips pursed, and shook her head. “No,” she said. “My ride didn’t come, and I have this thing on my phone that calls a cab, but it sends them to my apartment. I don’t know how to get them here, and I can’t reach my friend.”
She showed me her phone. The battery was now dead. I called for a taxi with my phone and helped her forward to the curb. She was tired and cold by then and suddenly seemed frail.
We chatted as we waited. Her name was Eva, and she owned a small business downtown—or she had. She was in the process of retiring, having been unable to do much work in recent months because of illnesses. She’d been hospitalized twice in the past year, she said. Nothing catastrophic, yet somehow the second stay had dismantled her life. Things had never quite gotten back to normal since then.
The geriatrician in me noted that she had some trouble hearing, even more difficulty seeing, arthritic fingers, and an antalgic gait that favored her right side. But her brain was sharp, and she had a terrific sense of humor.
Finally, the cab arrived. The driver watched as I helped Eva off the curb, an awkward, slow process because of her cold-stiffened joints, the walker, and our bags. As I turned to open the backseat door, he sped away without his passenger. I stared, dumbfounded, and pulled out my phone to call the company and complain. Eva was more sanguine.
“It happens all the time,” she said. Just then, a taxi from another company turned the corner. He slowed down for my outstretched hand but saw Eva and screeched off into the night.
“Damn,” she muttered.
It didn’t take a rocket scientist—or even a geriatrician—to figure out why taxis didn’t want to pick up Eva. Doctors and medical practices often invoke the same reasoning: The old move too slowly, making efficiency impossible. And more often than not, there are complications.
“I’ll give you a ride,” I said, having refrained from making the offer until then at least in part because of that uniquely American quandary: What if something happens to her and her relatives sue?
Her face lit up. “Oh no,” she said. “I couldn’t let you do that.”
It took almost as long to maneuver her into my front seat as it did to get across town. She directed me to an apartment complex on the steep slope of one of San Francisco’s trademark hills. Twin rows of stacked apartments, separated by an expanse of shrubs and trees, rose up the incline like terraced fields, their landings connected by flights of steep, poorly lit steps. As it turned out, Eva lived toward the top. Before we started up, she handed me her keys and pointed, explaining that she needed to exchange her going-out walker and cane for her at-home cane, which was in the garage. Also, she added, it would be a big help if I’d carry her mail.
I phoned my mother to reschedule and called home to say I’d be late. Getting up the steps was slow going. Along the way, I learned that Eva had been to the podiatrist that afternoon because she could no longer cut her own toenails. I told her what I do for a living. We discovered that she got all her medical care except podiatry at my institution and that I knew her primary care doctor and several of her specialists.
As I would write in an email to my general internist colleague the next morning, getting Eva out of my car and up the 49 stairs to her apartment “took nearly an hour because of her grave debility. She is very weak, has audible bone-on-bone arthritis in all major joints, frequent spasms in her left hip, minimal clearance of her right foot and could not move her left foot; I basically had to hoist her.” I had no idea how Eva ever made it up the steps unassisted and couldn’t imagine how long it might take when she did.
We took frequent breaks so Eva could catch her breath and have a reprieve from the pain she felt with every step. During each rest stop, she told me more about her life. She’d had several romances but no children. Most of her friends were also old and ill, so she didn’t see them as much as she’d like. She had lived in the same apartment since the early 1970s, loved it, and would never live anywhere else. She had a blood cancer that hopefully was cured, asthma, some kind of heart problem, and both glaucoma and macular degeneration. After a recent hospitalization for pneumonia, she had been sent to a local nursing home and said she’d rather die than go there again, though she wasn’t at all keen on dying. She hated that she could no longer work and couldn’t understand why people looked forward to retirement.
Forty some minutes after starting our ascent, we arrived at her apartment. Inside there was a living room crowded with stacks of books, magazines, and mail, and a small cluttered kitchen. It also had what a friend of mine, in reference to her own octogenarian mother, recently referred to as “that old lady smell.”
“Shut the door,” she said suddenly, but not soon enough. A blur of dark fur grazed my leg, and her cat disappeared down the steps into the night.
We both called him. No response. I walked down the steps, calling and looking. Nothing. After 10 minutes of searching, there was still no sign of the cat. This wasn’t the first time he’d escaped, but, she informed me, when an indoor cat got out, you never knew whether he’d be back.
I should have stayed longer to look for him, but I went home.
Before I left, Eva gave me permission to access her medical record, contact her primary care doctor, and make recommendations to help improve her function and well-being. What I found in her chart speaks with tragic eloquence to some of the fundamental ways in which our health care system undermines both patients and clinicians.
Logging into the electronic record the next morning at work, I learned that Eva had made 30 visits to our medical center in the previous year. This included nine ophthalmology appointments; five radiology studies; four appointments with her lung doctor; four visits to the incontinence clinic; three appointments with her cancer doctor; two emergency department visits; and one appointment each with her cardiologist, a nurse in the oncology clinic, and her primary care doctor. This tally does not include the appointments she missed because, as is noted in at least two places in her chart, “the taxi never showed up.” Eva also made frequent phone calls to her doctors’ offices and was taking 17 medications prescribed by at least five physicians.
There are words for patients such as Eva and this pattern of care. On the patient side, the words are “complexity,” “multimorbidity,” and “geriatric.” On the system side, they include “fragmented,” “uncoordinated,” and “expensive.” How and why this happens—and it happens far more often than not for all patients, though its impact is far greater on the old, ill, and frail—has at least as much to do with medical training and culture and the economics of medicine in the United States as with the challenges of old age itself.
The notes in Eva’s chart revealed clinicians providing thorough, evidence-based evaluation and treatment of the issue or organ system in which they specialized. Sometimes in medicine we see notes that suggest the doctor doesn’t really know the patient or is just going through the motions, cutting and pasting from past notes. These notes were different. Eva’s doctors and nurses knew her, seemed to care about her, and were applying all of their considerable expertise on her behalf. Unfortunately, their expertise didn’t include any of the skills that would have addressed Eva’s most pressing needs.
Several notes hinted at what I saw as Eva and I made our slow trek up the steps to her apartment. They documented terrible arthritic pain, significant mobility issues, and ongoing transportation problems. One physician commented that Eva “does not walk much in her own apartment but does utilize a walker. Often, however, she is semi chair bound.” Despite these important observations about Eva’s most bothersome medical condition and significant life challenges, none of the clinicians seeing her evaluated her joints and gait, did a functional assessment, treated her pain, or referred her to either a social worker or another clinician who might address these crucial needs.
Equally significant were the problems that no one mentioned. No physician commented on the number of doctors Eva had or visits she made, both of which might reasonably raise questions about fragmented care and the need for care coordination. Nor did any of her clinicians address her use of a very long list of medications, a situation known as “polypharmacy” and associated with adverse drug reactions and bad outcomes including falls, hospitalization, and death. Finally, and particularly remarkable for a woman in her 80s with multiple medical problems and no immediate family, no one documented her life priorities and goals of care, or who she would want to make medical decisions on her behalf if she were unable to do so herself.
After exchanging emails with her doctor, I called Eva to tell her what to expect. She wasn’t nearly as concerned about her medical care as I was. She liked her doctors and, as is the case for many people, seemed to take for granted that each body part required its own specialist. It also became clear that her medical visits served an important social purpose. When I mentioned that she could get her toenails trimmed by a home-visit podiatrist instead of making bimonthly trips to the clinic where we had met, she exclaimed, “But I’ve been going there for years. And they’re so nice to me!”
I tried to take a casual, conversational tone for my next question and asked whether she’d ever considered moving. I was thinking that a building on flatter terrain, without stairs, and closer to shops would offer her greater independence. Assisted living, if she could afford it, would provide those advantages plus cleaning services, meals, and a built-in social network.
“The only way I’m leaving here,” she said, “is feet first.”
I didn’t press her. As is often the case, Eva’s choices made her life more difficult. Yet it was also true that the apartment had been her home for decades, and anywhere she moved would be many times the cost of her 1970s-era rent-controlled apartment. Like the vast majority of older adults, what Eva wanted most was someone who would help her maximize her health and function so she could continue in the life and home she’d created for herself.
Before hanging up, I asked if I could put her on the wait list for our geriatrics practice. I explained that if she agreed, she would get a new doctor who would take a different approach to her care. The geriatrician would manage her diseases as her previous doctors had, but he or she also would begin by establishing Eva’s life and health priorities, address her function and transportation challenges, review her medications and appointments to see if all were truly necessary, and be available by phone or to make a home visit if she got sick to try and prevent hospitalizations.
Eva was silent for a moment. Then she said, “That sounds too good to be true!”
I know most of Eva’s doctors. Each one is compassionate, smart, and dedicated. Indeed, her diseases were largely under good control. Yet Eva’s health was declining, she was missing appointments, and she was less and less able to care for herself and her apartment. Several of her clinicians recognized this, but none took action. This was not because of personal or professional failings. Most physicians would have taken the same approach to Eva’s care as these doctors did. Their actions—and inactions—were the inevitable result of their medical training and our medical system’s sometimes myopic focus on medicine at the expense of health.
Medical education prioritizes the same specialties today as it did a century ago, when the average age of death was 47 and when tuberculosis and childbirth were among the leading killers. People in their eighth, ninth, and tenth decades are as different, physiologically and socially, from middle-aged adults as children are, yet all medical students learn pediatrics and adult medicine, but there are no universal requirements for geriatrics training. This makes no sense demographically or medically. There are 48 times more octogenarians now than there were in the first half of the last century, and older patients are the age group most likely to be harmed by medical care. The hospitalization in which Eva’s pneumonia was cured, but her life “ruined” by hospital and nursing home time without adequate or appropriate exercise, provides a typical example of how usual adult care fails older patients.
To rectify this situation, two things need to change. First, the groups charged with accreditation of medical schools and residency training programs—the Liaison Committee on Medical Education and the Accreditation Council for Graduate Medical Education, respectively—must mandate training in geriatrics for all medical students and for residents in all specialties where doctors routinely provide care to older adults. Importantly, such training cannot merely consist of providing standard adult care to patients over a certain age. Nor can it be narrowly focused on conditions known as geriatrics syndromes, such as dementia and falls. Instead, trainees must be required to attain competence in the unique approach to care that distinguishes geriatrics as a specialty: individualized, coordinated, team-based care that prioritizes patients’ goals, function, and quality of life. Given that the principal source of funding for residency and fellowship training is the Medicare trust funds, it should be relatively straightforward for policy makers to insist on links between graduate medical education payments and training that benefits the Medicare population.
Second, we must have billing codes and appropriate reimbursement for care that improves the health and lives of older adults. Currently, many critical geriatric interventions are either unfunded or funded at such low rates that growing numbers of doctors will not see Medicare patients. For example, a clinician who implemented evidence-based recommendations, such as design of an individualized exercise program or multifactorial intervention, to reduce Eva’s recurrent falls—the fifth leading killer of older adults—could not easily or straightforwardly bill for that work. Nor could the clinician bill straightforwardly for assessment and management of Eva’s functional status, multimorbidity, goals of care, or caregiver needs and caregiver effectiveness. Moreover, there would be no reimbursement for phone calls with Eva to assess response to treatment changes or troubleshoot her challenges. While Medicare’s new Chronic Care Management policy enables billing for time spent communicating with her caregivers, physical therapist, and social worker, the clinician would receive just $41 per month, regardless of how many calls and how much time was required. A system for both services and coordination based on time and with levels of payment that increased with increasing time required would encourage clinicians to provide the care a patient needs instead of providing inadequate care in artificially limited time frames.
Eleven months after I met her, Eva finally made it off the geriatrics practice wait list. During her first visit, the geriatrician elicited Eva’s health and life priorities and documented the name and contact information of her health care proxy. Because she listed arthritis and pain as her biggest problems, she received steroid injections in her two most painful joints and a pain medication safe in older adults. As her specialists had noted on her recent visits to them, her blood pressure was quite high. It turned out Eva wasn’t taking several medications because she hadn’t been able to get to the pharmacy for them. She was taking a medication known to worsen incontinence, another shown to benefit middle-age patients but not those older than age 80, and a few that might no longer be necessary. The geriatrician adjusted the timing of her medications so the schedule was simpler and less burdensome and arranged for home delivery from the pharmacy.
Eva’s geriatrician also learned that on days when Eva couldn’t manage her stairs at all, getting to the medical center was outrageously costly. She had to pay three dollars per step to be carried first down and later back up the steps to her apartment. Since there were 49 steps, this meant $147 each way or $300 per appointment, not including the fare for the ride itself. Fortunately she didn’t need to visit the medical center nearly as often as she had been. The geriatrician could treat her incontinence, stable lung disease, and other chronic conditions as well as monitor her for cancer recurrence, all during home visits. Other members of the team—in this case, a nurse, physical therapist, and social worker—helped align Eva’s self-management skills, activities, and home environment with her goals. The only specialist Eva still needed was the eye doctor. Equally important, with the money she saved on transportation, Eva could hire more help at home.
Helping an older adult find a caregiver, delineating the caregiver’s tasks, monitoring the caregiver’s work with the older adult, and ensuring the caregiver’s own well-being are not traditional medical tasks. They are, however, among the most important interventions to ensure the well-being and safety of frail older adults. Once in place, Eva’s caregiver picked up medications, assisted with cooking and exercise, and cleaned the apartment. She also provided Eva with much-needed social interaction and foot care.
Nearly three years later, Eva is looking forward to her ninetieth birthday. She is frailer than when I first met her, but all her primary goals have been met: she has remained out of the hospital, out of nursing homes, and in her beloved apartment with her cat, who did eventually come home. Those who argue that health care consists primarily of prescriptions and procedures, or treatment of body parts and diseases, have created a system that prioritizes medicine to the detriment of patient health. It’s time we took a broader view of health care—one that puts the well-being of patients first and trains and rewards clinicians who work with patients, caregivers, and other health professionals to achieve that goal.
Volume 34, Number 3. March 2015.
Editor’s Note: The woman’s name in this essay was changed to protect her privacy.
A Family Disease
Witnessing Firsthand the Toll that Dementia Takes on Caregivers
A geriatric psychiatrist recounts the life-changing stress experienced by relatives who care for loved ones with dementia.
Gary Epstein-Lubow
In the summer of 2012, my father-in-law, Ed, telephoned on a Sunday night with some surprising news. Sylvia, his wife of 55 years, suddenly did not recognize him. She had recently been diagnosed with very early-stage dementia, but her symptoms had not yet been this severe. Over the phone, my wife and I eventually convinced Sylvia of the truth: Ed was not an imposter. I wished we could stop by their house to help her feel more comfortable, but they lived in New Jersey, and we were miles away in Rhode Island. As a geriatric psychiatrist, I had urged Sylvia to seek care early, which she had done, and so she knew options for her treatment included activities to keep her socially engaged, medication to slow the illness course, and possibly experimental treatment. But on a personal level, I was worried. I worried about Ed, my wife, her siblings, and myself. We would be Sylvia’s caregivers for the rest of her life. And I understood the devastating toll dementia could take on an entire family.
Over the next few months, Sylvia’s most difficult symptoms, such as misidentifying her husband, briefly appeared and then disappeared. Eventually Ed discouraged her from driving and cooking so she wouldn’t accidentally hurt herself. Generally she accepted her new limitations. She knew she had dementia and agreed to meet with a nurse care manager and a psychiatrist. She was even pleased to have her children visiting more often to help out. But she also had episodes where she’d feel persecuted and frightened. She would get angry. Usually she was happy when I visited, but one day she turned to me, hostile in a way she’d never been, and told me, “You’ve changed, and I’m very disappointed. It’s time for you to leave.” I told her I would go after I said good-bye to the rest of the family. A few minutes later, she’d forgotten about it and was happy to have me stay.
This went on for weeks. We tried keeping Sylvia busy with activities she enjoyed, such as outings to meals and the gym. We brought in more clinicians and started her on new medications. But one morning Sylvia was struck with severe terror. Believing Ed to be an intruder, she ran from the house to a neighbor’s, who did not understand the situation and called the police. Ed telephoned us in Rhode Island, and we called the nurse care manager, who happened to be planning a visit to their home that morning. The officer and the nurse arrived at the same time. My wife and I took turns talking on the phone with Ed, the officer, and the nurse. The police officer decided Sylvia should be taken to a hospital, so my wife canceled her day’s plans, packed her bags, and set off in her car to New Jersey.
The nurse accompanied Sylvia to the ER. It was early in the morning so it was not crowded. Sylvia was given the standard blood, urine, and X-ray tests to determine if any new medical issue might be the cause of her distress. Nothing abnormal was found. Learning I was a psychiatrist, the mental health clinician in the ER called me to tell him more about my mother-in-law.
“Do you think she needs to be in a hospital?” he asked after we had spoken for a while.
“For treatment?” I hesitated. I was not Sylvia’s doctor, or really her son. “That’s a good question,” I said, and explained that my wife would be there soon.
There was a bed available at one recommended hospital, but the doctor wasn’t sure yet if Sylvia’s behaviors met the criteria for hospitalization. My wife finally arrived, frazzled but glad to be there. As she spoke with her mother, it became clear that Sylvia did not remember the morning’s events. She was surprised to hear about it; it even seemed funny to her. When Ed arrived at the ER later, Sylvia was very happy to see him.
Together, our family was forced to face the larger, chronic problems that we’d been wrestling with for months without progress. Hospitalization seemed like the next step. With her family around her, Sylvia understood and accepted the plan. “I have a memory problem,” she said. “I’m going to get help.”
Sylvia was more confused in the hospital than she had been at home. She started on a ward with psychiatric patients of all ages and then was transferred to a smaller unit of mostly dementia or schizophrenia patients. Sylvia’s ending up in the hospital felt to me like a failure—an event that could have been avoided, perhaps, if we had put more services in place earlier, or moved Ed and Sylvia in with us, or selected the right medication, or not selected the wrong medication. I was torn between my belief as a psychiatrist that her symptoms were not so severe and my belief as a son-in-law that our family could not handle any more stress.
At the hospital, Sylvia had no problems recognizing Ed. She relished his visits. They would sit side by side, holding hands, while she confided in him her worries about what was happening around her, telling him she loved him. It seemed as if they were sitting on the porch together again.
A change in her neuropsychiatric medications appeared to be helping. Medication treatment for dementia is complicated, at best. With no drugs approved specifically for the symptoms of dementia, medications for other conditions, such as depression or schizophrenia, are used off-label, with frequent side effects, such as restlessness or sedation. We had tried several before finding something that seemed to help, at least a little.
After a couple of weeks, the family began to worry that hospitalization had only temporarily solved the problem and wondered what we’d do when she was back home. She’d need someone around to guide her, and the job was too much for Ed alone. Our family arranged a call to discuss what would come next for Sylvia, sparing Ed from making the tough decisions alone. We decided for Sylvia’s sake to move her to a “memory care” assisted living setting. This left Ed at home alone for the first time in his life. At this point, I wasn’t sure which of my wife’s parents worried me most.
At the hospital where I care for patients with dementia, I watch these kinds of difficult decisions all the time. But in that moment, being on the inside, seeing how high the stakes were for everyone, it became clear that treatment for the patient with dementia is just one facet of good care. Dementia also takes a toll on the family caregivers—a toll that cannot be discounted.
There are treatments and practices available that could help patients with dementia and their caregivers, including support programs that aim to keep families together at home and to reduce caregivers’ burden and depression. Sadly, access to family-based solutions remains limited. In fact, the situation today is not much different than it was when my own grandparents wrestled with the same problems 25 years ago.
My grandparents, Wicky and Irving, were staunchly independent. After Irving retired, they packed the essentials from their New Jersey home and moved 700 miles to be near my mother and her family—my father, me, and my two siblings—in Cincinnati, Ohio, where I grew up. My grandfather, a lawyer trained at Columbia University, was a trusted companion to my grandmother and a loving and supportive guide to my mother, my siblings, and me. In the first years after my grandparents moved to Cincinnati, they spent winters in Florida, competing in bridge tournaments. Irving always took the wheel for the long road trips there and back.
But then Irving started making mistakes. He could no longer keep up in the bridge games, his finances began to confuse him, and he’d forget appointments. Even his movements became slower. As his memory and mobility worsened, he moved with my grandmother to an assisted facility. His gradual decline continued until eventually it became a chore for him to use the bathroom and bathe. When he became incontinent, Wicky, my mother, and Irving decided he would move to a nursing home while Wicky remained at the assisted facility. He did OK at the nursing home. He did not mind clinical staff helping him with washing, bathing, and eating. He enjoyed socializing, and he accepted the simple daily routine.
But Wicky did not adjust quite as well. She visited Irving at least twice a week, and they spoke by phone several times a day. It was stressful and challenging for her, but she knew the value of a devoted marriage. Irving had always supported her choices. She had been an advertising copywriter and also edited a women’s newspaper. After marrying my grandfather, she continued to work until she became pregnant with my mother. For decades they had been able to “take care one on the other,” a phrase borrowed from Wicky’s Russian immigrant mother. But with Irving in a nursing home, Wicky had to figure out how to balance his needs with her own. And as she cared for him and saw his decline, she had to face her own fear of incapacitation.
My grandparents were in their 80s at the time. To Wicky, the man she visited in the nursing home was not the same man she married decades ago. Irving remained, for the most part, accepting and calm amidst dementia’s advancing stages. If her own memory ever failed, Wicky told my mother, their only child, she would not be able to tolerate it.
My mother helped Wicky adapt and cope. She planned her parents’ finances and living arrangements and became an increasingly central part of their social life, spending more time with them and becoming a closer confidant to her mother. My mother learned to juggle her responsibilities to her parents, herself, my father, and me and my siblings. Then my father was diagnosed with colon cancer, and Wicky knew that my mother had new competing caregiving responsibilities at home.
My grandmother had long worried that she was a burden to her daughter, and my father’s cancer only confirmed her fears. She began to think more and more about her own death as a choice. She closely followed the news reports and talk shows that at the time featured Dr. Jack Kevorkian famously helping his elderly patients plan their own deaths. She read his then new book, Prescription: Medicide, the Goodness of Planned Death, and discussed it with her family. She often told me how her biggest regret in dying, whenever it happened, is that she would not know “how the story turns out.” Then she would add, “But somehow I’ll know, and somehow you’ll know that I know.” That was Wicky, planning to be a loving caregiver, even after her death.
My father’s cancer was successfully treated, and Wicky and my mother returned to coping once again with life’s challenges.
A couple of years later, Wicky was hospitalized with pneumonia. Her assisted living facility had a skilled nursing unit where she could receive three days of care without any additional charge to her. But she left skilled care after one night, preferring to be in her own apartment. While she was sick, she had been unable to visit Irving in the nursing home, so perhaps getting back to her own apartment would allow her to see Irving again soon.
Wicky was still mostly independent, but being ill must have made her feel afraid that she might soon need more assistance herself. She had always hated the idea of living anywhere other than her own home. She also hated when circumstances dictated what she could and could not do.
Less than two weeks after Wicky was discharged from the hospital for her pneumonia treatment, she committed suicide. The family was shocked. She had acted on what she read from Dr. Kevorkian, ingesting sedatives and alcohol as he advised.
Looking back, I wonder what could have been done to prevent the suicide. Wicky had openly discussed her ideas and feelings about death. On her suicide note, she’d written, “no rhyme or reason” and a comment about her trust that Irving would be OK … and then her pen drifted down the page. I am certain her husband’s dementia and the toll it took on the family contributed to her decision to end her life. My mother arranged to have Wicky’s funeral service in the chapel at Irving’s nursing home. My grandfather died a year later.
For the patient, dementia is a terminal illness. For the caregiver, it shouldn’t be.
Caregiving for a person with dementia is a risk factor for homicide and suicide, studies show. Family caregivers of people with dementia have two to three times the rate of depression as noncaregivers—another risk factor for suicide. As time marches on and a patient’s condition worsens, the threats for family caregivers continues. My mother had always worried about this. Today my family worries about the same thing: Is caring for Sylvia too much strain on Ed?
A recent Alzheimer’s Association report estimated that more than 15 million Americans are currently providing unpaid care to a loved one with dementia. In January 2011, President Barack Obama signed into law the National Alzheimer’s Project Act, which led to the publication of the first National Plan to Address Alzheimer’s Disease in May 2012. This plan proposes to develop effective treatments for Alzheimer’s by 2025, enhance care quality and efficiency, and expand supports for people affected and their caregivers. But the road to reach these goals is understandably long.
A short-term plan is needed, with more attention to families. We need care for the caregivers to be integrated into care for the patients. When Sylvia was in the hospital, I was disappointed (but not surprised) that nobody stopped to ask my wife, or anyone in the family, “How are you doing?” When my mother was caring for her father, none of the staff stopped to ask her about herself. After my grandmother’s suicide, my mother stepped up her involvement at the nursing home. Each day she would walk out confidently and then sob in her car.
It’s tragic that these systems still have not changed. Evidence shows that support programs prevent depression in family caregivers and extend the time a person with dementia is able to live at home. Yet services such as these are still hard to find.
Agencies such as the Alzheimer’s Association are helping guide a national agenda while also providing direct local support to patients and caregivers, but we need more federal action to aid families. In the current health care environment, improvements in the integration of patient and caregiver services can be made at initial diagnosis, care transitions, and the end of life.
Under the Affordable Care Act, screening for cognitive impairment will be included in annual wellness visits covered by Medicare with no co-pay. As we improve the detection of cognitive impairment, there will be an increased need to assess family caregivers’ functioning and to link caregivers and patients to regional centers for family education and resources, which is recommended by most stakeholders.
I wish we’d had a regional center in New Jersey when Sylvia became ill. Instead, we brought her to Rhode Island to meet clinicians I know. We paid out of pocket for a private nurse coordinator service in New Jersey. We were lucky to be able to find and afford these resources; most families can’t. Legislation in Congress introduced in April 2011, called the Health Outcomes, Planning, and Education (HOPE) for Alzheimer’s Act (S. 709 / H.R. 1507), would help make the services we sought, such as care planning, more readily available.
The HOPE for Alzheimer’s Act focuses on the time of initial diagnosis. This is an important first step, and similar services for family caregivers are needed when dementia patients are hospitalized or begin residential long-term care. These transitions of care are stressful for family caregivers and are unique opportunities to include them in patient care planning.
A major barrier to these quality improvements in dementia care, including help for caregivers, is a limited workforce. It is expected that in 2030 there will be only one geriatric psychiatrist for every 6,000 older adults with a mental health or substance abuse issue.
An expanded workforce is necessary not only for diagnosis and treatment but also to help family caregivers and patients consider advance care planning, which involves thinking ahead about decisions on medical treatments, housing, finances, and end-of-life care. Access to information about advance care planning is improving, but there is no one place where this process is “owned” over time.
I wonder what Wicky would have thought if one of Irving’s doctors or nurses had invited her and my mother to a conference to discuss Irving’s end-of-life wishes. I’m sure Wicky would have brought her ideas about assisted suicide—controversial as they were then and today. I imagine how a clinician trained in palliative medicine would have explained to Wicky the hopeful options for a good quality of life, even with advanced dementia. Maybe she would have made different choices about her own life and death. For my family, this is fantasy, but for millions of Americans today, it could be a reality.
Moving Sylvia to assisted living made Ed worse. After decades of companionship, he now spent most of his time alone. Each day included a burdensome drive to visit Sylvia. He became depressed, and our family turned its attention to him. We helped Ed look at every option for how he could adjust his life to adapt to Sylvia’s gradual decline, but nothing, at that time, could soothe the distress he felt with losing Sylvia in his daily life. After a few months, he chose to move to an apartment in the same facility as Sylvia’s dementia care unit. We expected this would be temporary, but he liked it and decided to stay so he could be closer to Sylvia.
Now Ed can easily see Sylvia every day, like it’s always been. When Ed takes Sylvia “out to dinner” in the main dining hall, or when they visit together in Sylvia’s room, he has trouble understanding everything she talks about. “She seems to enjoy it,” he says, “and she keeps telling me she loves me.”
Volume 33, Number 4. April 2014.
Editor’s Note: The names of individuals alive today have been changed to protect their privacy.