the possibilities
making the passage richer
Typically, when a doctor knows that death is inevitable, that all the drugs or surgery or radiation in the world cannot stop this process, he or she turns grimly toward the patient and/or family and says, “I’m sorry. There is nothing more that we can do.”
This is a travesty. These words should be outlawed from hospitals, banned from nursing homes, erased from our lexicon. What a horrible thing to say, and what a profound untruth it is. For it is now, when death is inescapable, that there is so very much to be done, and doctors should help direct families toward that work. In fact, the patient and loved ones should have been encouraged to start this work long before this point.
What is to be done and how it is done, through gestures large or small, will depend on the patient, the family, and friends. A patient might want to set some priorities, and, if it is not already too late, act on them. He or she might want to take a long-desired trip, write letters, give away treasured belongings, get in touch with long-lost friends, or say anything that needs to be said—I’m sorry. I love you. You are forgiven. This is a time to be kind to oneself—to allow the tears and emotional pain, to acknowledge the very human needs and fears that arise, and to refuse any blame for what is happening. Most important, it is a time to surround oneself with family and friends.
No one should be thinking, much less saying, “There is nothing more we can do.” It is this sort of attitude that leaves family members grief-stricken and numb, staring silently, waiting, and watching. They have been told there is nothing more to be done, and so they do nothing. But they desperately want to do something. Inertia is of no value to the patient and leaves family members and other loved ones feeling powerless, useless, and anxious. This helplessness, this inability to soothe and comfort a loved one at such a time, is often more upsetting for survivors than anything else. And it is often what drives families to push for more therapies.
Betty Lou Muhlfeld was adamant that she not receive aggressive life-sustaining care at the end of her life. She had watched both her mother and her sister struggle with cancer, undergo surgery, radiation, and chemotherapy, and then die long and agonizing deaths, and it was not going to happen to her. She was not going to be disfigured, debilitated, or immobilized. “She was a person who absolutely loved life and lived it to its fullest,” her daughter Lucy said. “She didn’t like growing old. And she felt that there was no desperate urge to continue if life were no longer fun. She would say, ‘If I become incapacitated, just kill me.’ ”
In her late sixties, Betty Lou was diagnosed with breast cancer. She had her breast removed and seemed to be cured. Ten years later, the cancer apparently returned. No one knows for sure what happened because she never sought medical care and was never diagnosed. But she seemed to know that the cancer was back, and she did nothing to stop it. During the last year of her life, she reminded her daughters that she did not want aggressive treatment, and asked them, if it were ever necessary, if they would help her kill herself.
Unfortunately, that was pretty much all that was said. There was no plan for exactly how this quick, clean death might occur. Without a diagnosis, much less a prognosis, hospice could not step in, and no other home-care agency or doctor was in a position to carry out her wishes—to help her die when they didn’t even know what was wrong with her. So when Betty Lou had trouble swallowing one evening, her family did the only thing they could: they took her to the emergency room. Doctors discovered that her intestinal tract was blocked. They wove a tube through her nose and into her stomach so they could continually pump out its contents (since nothing could get through the other way). They began artificial feeding and hydration. And they recommended a colostomy—surgery in which part of the large intestine is pulled through a permanent opening in the belly and feces are discharged directly into a bag. Now, Betty Lou had no intention of having a colostomy. Her mother had had one and this was the one procedure she never wanted to endure. But the doctors insisted that the blockage might be due to something treatable—maybe it was not cancer, but some benign intestinal disorder—and without treatment, she would, in one doctor’s words, “explode.” Her children coaxed and she finally acquiesced. “She said, ‘This is not what I want, but I’ll do it,’ ” Lucy recalled.
Betty Lou awoke after her surgery to find not only a colostomy bag attached to her belly, but a breathing tube blocking her mouth. “It horrified her,” Lucy said. The blockage, as it turned out, was cancerous, and although her doctors thought they might be able to extend her life, maybe by several years, Betty Lou had no interest in pursuing chemotherapy or radiation treatments. So they removed the feeding tube, and gave her morphine. Eight days after her surgery, Betty Lou died.
Lucy is sad that her mother suffered, that she had a stomach pump, feeding tube, breathing tube, monitors, and surgery, but she recognizes that her family had little choice, given that they didn’t know what was wrong with Betty Lou and thought, quite reasonably, that she might have survived with treatment. What she really regrets, what pains her deeply, is not the tubes or surgery her mother endured. What makes her cry anew when she recalls those final days is that she didn’t know how to talk to her mother, how to calm her, cheer her, and say good-bye. Even once she knew without doubt that her mother was dying, she didn’t know how to fill those final days of living, how to give her mother the kind of celebratory send-off that she deserved and would have loved.
“We were all gathered around, staring at her for twenty-four hours a day,” Lucy recalled. “She would open her eyes and look up and just see us all staring at her and rubbing her arms. I think it must have been horrifying, or embarrassing…. I couldn’t say anything. I didn’t talk to her. I just stared.
“I wish that I had spoken to her about death and how she was feeling. I wish I had asked her, ‘Are you scared? How can I help you through this?’… If we had all had scotch-and-sodas in our hands and we had brought in a family album and she could have heard us telling old stories, there’s no question that would have given her such pleasure.
“You’re sitting there and you, you just want to send all your energies, you want to, to soak them up …,” Lucy said, unable to finish her sentence. She cried for a moment and then continued. “I think I’ll do it better next time. Maybe. I know now that it’s all right to laugh, to talk about wonderful things, and to be joyful and happy. Let’s face it, we all know what’s happening in that room. So rather than sit there like some cloud, staring, why not make it a little more soothing and joyful?”
Whatever is going on medically, this final stage of someone’s life is not a time to be sitting “like some cloud.” It is a time of the greatest heights of human love and the deepest depths of human agony. It is a time of dying, but it is also, more than ever before, a time for living.
I offer a few examples here to give you a sense of what is possible. But each person is different. While touch is a powerful relaxant for one person, it can make another tense. One person might be open to shared meditation, while another squirms at the mere thought of it.
Hospice care. The sole purpose of hospice programs is to help people live fully and die peacefully, and hospices are wonderfully adept at doing that. The goal of hospice care is not to fight death, but to make the most of life, by keeping the patient as comfortable and able as possible, and by helping him to find peace in his relationships and his life. While families provide most of the hands-on care, hospice staff provide medical, psychological, spiritual, and practical support both to the patients and their families.
Hospice care is not about giving up or waiting to die. This is important to understand. People do not die sooner because they receive hospice care: in fact, there is evidence that they live longer once their pain and fears are alleviated. Hospice is not “soft” medicine, nor is it outside the bounds of conventional medicine. People who use hospice services receive superior medical treatment from top-notch doctors, nurses, and other professionals. The only difference is that the aim of treatment is comfort, and on living life, not on fighting death.
In America, the word “hospice” refers not to bricks and mortar, but to a philosophy of care and a program of services. While some American hospices care for patients within a free-standing unit or a special wing of a hospital or nursing home, most provide services to patients who live at home. Nurses and social workers visit the patient and family as needed. Home health aides and volunteers often spend several hours each day in the patient’s home. But beyond this, most of the day-to-day care falls on the family.
There are thousands of hospice organizations across the United States and Canada. The programs are accessible to most people. However, hospice is a philosophy of care that can be adopted even if no formal program exists nearby; it just takes legwork and a strong commitment to such care. Home-care agencies that are not certified hospices can often provide hospice-type care if you round up the right team.
Hospice care is hobbled by the fact that Medicare and other insurance plans require a doctor to declare that a patient has less than six months to live—a prediction doctors are hard-pressed to make. They can prognosticate with some confidence when it comes to many forms of cancer—although even that is getting more difficult as new treatments are developed—but it is difficult to make such a call for patients with less predictable illnesses such as heart and vascular disease, chronic lung disease, or dementia.
Doctors are also often reluctant to suggest hospice care because they don’t want to upset the patient and family. Or they might hold out hope of turning things around, despite what they know about the prognosis. Or they might think they can provide adequate palliative care, without realizing how complex and time-consuming such care can be.
Sometimes people do not receive hospice care because there is no inpatient unit nearby and family members and friends cannot provide, or have no interest in providing, the kind of physical and emotional care that is required to keep someone who is terminally ill at home.
But one of the biggest obstacles to hospice care is that people are not ready, not prepared either emotionally or mentally, to choose that route. Most hospice programs insist that patients forgo aggressive life-sustaining medical treatment. A patient might receive radiation to shrink a tumor or surgery to clear a blockage if that treatment will make the patient more comfortable. But in most cases, a patient would not receive treatment aimed solely at fighting the underlying disease, largely because such treatments can get in the way of comfort care and the emotional work of dying, but also because hospices are not reimbursed for such procedures. This means that patients and their families must make a tremendous leap in their thinking—a leap many are not ready to make.
Patients and their families, as well as their doctors, often don’t want to believe that the patient will die. They don’t want to let go, they don’t want to accept death. Not yet. Not now. When I asked the daughter-in-law of a man who was clearly dying whether the family had considered hospice care, she responded with disgust, “He doesn’t want to just sit and wait and die.” No, she explained, the family was looking into other possible treatments for him. Her father-in-law died two days after our conversation.
If you or someone you love is ever seriously ill and hospice care is of any interest, don’t wait until the last minute to get in touch with a program. Even if it does not seem to be time for hospice yet, or if you think you may not even need hospice, initiate a conversation, learn about the local program, and discuss the patient’s situation with staff members. That way, you will have some introduction to the services, and if and when such care is needed, all the players will be in place. (To learn about the local hospice or to get a referral, ask a doctor, visit the National Hospice and Palliative Care Organization Web site at www.nhpco.org, or call the Hospice Helpline at 800-658-8898.
Palliative care. For those patients who remain in the hospital, comfort care is still possible, it’s just a whole lot more difficult to get. More and more hospitals are establishing palliative care programs, and others are becoming more aware of such services.
When an illness is being aggressively treated, pain and symptoms are often unavoidable. The disease causes pain, the treatments can cause pain, and the effort to treat the disease can preclude the use of high doses of pain medication, as such medication can cause drowsiness and can compromise certain bodily functions, such as respiration. But certainly hospital patients could be made more comfortable than they are. And once someone switches tracks from aggressive treatment of disease to palliative care—which is aimed not at curing disease or even fending off death, but at improving the comfort and quality of the patient’s life—pain can be eased dramatically. In fact, palliative care experts claim that almost all dying patients can be kept relatively comfortable.
But palliative care is a relatively new field of medicine and the techniques involved in pain management, much less the more comprehensive art of psychological, social, and spiritual care, are not widely known. Perhaps more to the point, in a busy hospital where the goal is to make people better, palliative care is simply not a priority, and tasks aimed merely at keeping patients comfortable are overlooked. Patients routinely fail to receive adequate medical attention for pain, nausea, and other symptoms, and hospital personnel do not have the time to explore nonmedical approaches to pain, such as relaxation techniques, music, psychological and spiritual counseling, gentle massage, and the presence and support of loved ones.
In the hospital, patients tend to get pulled along with the current, and a strong current it is. You, as the patient or as a loved one, will have to fight for the kind of treatment you want. You will have to talk to the doctor and any nurses involved. If you do not want all-out, lifesaving medical care, you’ll have to make clear what your goals and expectations are, perhaps by posting signs above the patient’s bed that explain what is to be done—and not done—in an emergency, and list the priorities for care (i.e., comfort, peace, time with friends and family, etc.). Hospitals are not set up to provide good end-of-life care, but things are improving, and with an assertive effort, you might find some reasonable amount of comfort and peace.
Pain medications. Doctors tend to be stingy with pain medications because they erroneously fear legal action, because they worry that the medications are not safe in large doses, and because they have their own biases and misconceptions. Sometimes doctors wonder if a particular patient isn’t just complaining unnecessarily. Sometimes they are concerned about patients becoming addicted to such drugs. Sometimes they want to avoid the confusion and drowsiness these drugs can cause, or worry about hastening death through the use of narcotics. The truth is that a) if a patient says she is in pain, she is in pain—her own perception of pain is adequate evidence that pain exists; b) people who are not prone to addiction will not become addicts because they are given narcotic painkillers (and anyway, who cares about addiction when someone is dying?); and c) while confusion must be weighed when administering drugs, the patient should be the guide in determining how to balance pain and sedation.
Patients are to blame as well. Some believe that “good” patients don’t complain, that “good” patients are stoic and quiet. Some feel that they are “giving in” to a disease if they take pain medication. Some worry about side effects or worry that if they take the medication early in their disease, the drugs won’t work later when the pain is more severe. And sometimes they believe, in this era of “just say no,” that morphine and other narcotics are dangerous and should be avoided.
Pain should be treated, and it should be treated aggressively. Doing so does not alter the course of an illness, limit the effectiveness of future pain management, suggest anything about the character of a patient, or create drug addicts. Pain, as I’ve already mentioned, is permeating. It changes our personalities, making us short-tempered, tired, and less able to cope or interact with others. It leads to other symptoms, such as anxiety, depression, nausea, and insomnia. And chronic pain makes people less able to cope with any pain, so small aches can feel monstrous.
Ideally, medication is given at regular intervals, before pain becomes acute and, therefore, harder to control. Doses should escalate to match the pain. And finally, other methods, such as nerve blocks, should be explored.
Without the help of a hospice program or a palliative care expert, you will have to be knowledgeable, determined, and perhaps even a bit belligerent to get adequate pain relief for yourself or your loved one. Go ahead, be noisy. Demand that pain and any other symptoms be treated.
Having said all this, it is important to note that narcotics, sedatives, and other medications are only one element of comfort care. Alternative medicine offers other useful tools to combat pain and anxiety, such as acupuncture, reflexology, meditation, and relaxation techniques. And emotional, spiritual, and family support is absolutely essential. No one should be stingy with pain medications, but morphine should not take the place of spiritual support, and sedatives should not be given in lieu of gentle reassurances and tender touch. We must not numb the body and then neglect the soul, for suffering at the end of life extends well beyond physical discomfort, and dying well involves far more than dying free of pain.
“Double effect.” When people talk of a “double effect,” they are referring to the belief that giving morphine in doses hefty enough to keep a dying person comfortable will not only kill the pain, but may also kill the patient. Family members are often left feeling that, in their effort to ensure the patient’s comfort, they have actually caused his or her death. Proponents of physician-assisted suicide also use the notion of “double effect” to support their position. Doctors, they argue, sometimes prescribe large doses of morphine with the dual effect (and, in some cases, dual purpose) of easing pain and hastening death, so why not legalize this activity and let them kill patients without any other objective? This gets into a lengthy debate about intent—death as a side effect of treatment versus death as a goal of treatment. But what has been overlooked and underreported is that there is no evidence that increasingly large doses of morphine can kill patients or even alter the course of an illness. In fact, there is evidence that morphine, given palliatively, does not contribute to death. (And some research suggests that it may actually help to prolong life.)
It is true that morphine acts on the breathing center in the brain and, under normal circumstances, large doses of it can compromise respiration and cause death. However, if morphine is given in moderate doses that are increased gradually, as is done with terminally ill patients, those doses can be pushed well beyond what would normally be a deadly quota, and not have a fatal effect. Apparently, the respiratory system becomes tolerant of the drug and can withstand incredibly large quantities of it—ten times the dose normally given to cancer patients, doses that would kill someone who had not built up such tolerance.
Gathering friends and family. Whether someone is at home with hospice, or in an ICU, this is a time to be with family and dear friends. Once someone is bedridden, the mere presence of loved ones is often all that is necessary. You don’t need to involve the patient in conversation; just having a few special people nearby, talking to each other, telling stories, reading aloud, or just sitting quietly, can offer the dying person enormous comfort.
Forgiveness and healing. This is also, among other things, a time of closure. It is a time of finishing the unfinished. As much as possible, mistakes need to be forgiven, wounds healed, severed relationships repaired.
Sometimes people worry that if they proffer their love or forgiveness they will make the whole thing seem too serious. Better to err on the side of being too forgiving and too loving, if there is such a thing. If the patient goes through a particularly serious setback and then recovers, that is a perfect time to tell him that you were worried and the experience made you realize that you had thoughts that needed to be aired.
However, it is also important to note that just because you need to reconcile the relationship doesn’t mean that you will be able to. The person who is dying may not have the interest in or strength for such matters. Say what you need to say, but don’t be angry if your loved one can’t or won’t respond. They heard you. Let it go.
Creating legacies. When people realize that life is coming to a close they often want to leave something behind, something that reflects their life, their history, or their values. A legacy—a journal, photo album, tape recording, collage—represents some facet of a person—his ancestry, his hobbies, his thoughts, his dreams. Creating a legacy is a powerful tool, helping people to pass something of value on to others and begin the process of letting go. For survivors, the gift, whether it be elaborate or whimsical, is a lasting and meaningful remembrance of this person’s life and spirit. Something to cherish, read, or review. Something to make them cry, laugh, or simply remember.
Reminiscing and life review. Reviewing one’s life can help a person realize that her life was, indeed, valuable, and that despite any mistakes that were made, she has accomplished many things, small and large. It allows her to pass on family history and it returns her to better times, moments that were fun or meaningful, times when she was happy and carefree and strong.
While people often do their own internal life review, loved ones can help the process by asking questions, or discussing special moments. (You might want to tape-record or videotape this conversation.) Through this, they not only help the patient, but they stand to learn things about this person—how Mom met Dad, who her ancestors were, the fact that she used to spend all her free time painting—things that they might not have a chance to learn later.
Ask about your father’s childhood, his playmates, his parents and grandparents, and his early schooldays. What did his childhood house look like? Was he rebellious as a teenager? What were the most memorable moments in his life? What was his first job? What did he like most or least about his last job? And so on.
When a person can no longer talk, you can help revive these good times for him. When my father was dying, my mother, siblings, and I talked often about the wonderful things we had done together, reminding him that he had had a good life and was a good father, while also pulling his mind into pleasant scenes. We recalled the way he would stand at the edge of the pool, holding his nose and waiting nonchalantly for one of us little ones to push him in, or how he would carry us on his shoulders and swerve around as if he were going to drop us at any minute. At one point, when he was almost unconscious, I softly sang the school song of the university that he and I had both attended—a school he had loved dearly—and as I came to the refrain, his eyes popped open and he sang loudly along with me, even finding the energy for a few hand motions. It’s a sweet memory for me.
We also talked in some detail about his favorite places, and in doing so, took him once again to those places. As my father lay dying, we strolled together along California beaches, we sailed along the coast of Maine, we walked along the rocky, pine-covered paths behind our summer cottage. As we described these familiar sights and sounds, his body relaxed as it floated freely away from his sickness and reentered these beloved places. Or maybe, he became them. For me, my father is not only in these places now, he has become part of them. He is the glowing sunset over Big Sur; the stony bridge he built, rock by rock, on a tranquil Canadian lake; the waves lapping rhythmically against the side of our friend Ralph Halsey’s sailboat. He is, as a wave or a sail or a rock, serene, and always there for me.
Spiritual support. Even people who have not been spiritual in life often become attuned to spirituality and religion in the face of death. Offering spiritual support is not about administering last rites or a perfunctory meeting with a member of the clergy. It is about listening to and exploring a person’s deepest questions, fears, and needs, and discovering what gives them strength and comfort. It might mean religious discussions or readings, but it also might mean something different altogether. Our job is to be open to it and to allow it, accepting spirituality in a variety of guises.
Douglas C. Smith, in his book Caregiving, tells wonderful stories about people who found spirituality in religion, in magic, in what some might dismiss as hallucinations, and even in thinking about a favorite bar. It is important that we not impose our own beliefs on others, but remain open to an individual’s own form of spirituality and allow it to provide the person who is dying with some comfort.
Relaxation techniques. There are a number of ways to help someone relax, which can help ease not only stress or fear, but also physical pain. These are useful to learn for any stressful situation, and it’s helpful to have them in place so they are familiar when illness is a factor. In one method, you lead the person’s mind toward a soothing place, somewhat as I did with my father. In another method, you focus not on the place and the memories, but on the body’s response to the place and the physical release it inspires. Most often, a beach is described. Speaking in a soft and even voice, describe tension flowing out of the body and the muscles relaxing one by one as the person eases himself down onto the sand. The warmth of the sun on his chest and face, the rhythmic roar of the ocean as it rolls up onto the shore, the softness of the breeze, the sweet smell of sea air. Talk the person through this exercise, mentioning each muscle of the body, helping them to feel the heaviness, the pull of the sand on each part of the body—toes, ankles, calves, knees, thighs, and so on.
Meditation is also a powerful tool for alleviating stress and pain. Although it is helpful if a person has practiced it in the past, anyone can try it. The person sits comfortably (preferably upright, but a lounging position, or even lying flat is fine), with her eyes closed. She takes a deep breath and then exhales, slowly releasing tension with each breath, focusing on various body parts, one at a time, releasing tension from her toes, feet, calves, and so on, and moving on up to the head. Often people will repeat a word, or mantra, like “peace” or “relax” or “comfort,” or any other word that is calming.
Touch and massage. Touch is an important element in end-of-life care that we often neglect, so afraid are we of hurting this fragile body, so obstructed by the tubes, so unsure of our place in this event. But the most simple physical contact—stroking a person’s arm or combing her hair—can be extraordinarily comforting at this time. Talk to the doctor or nurse. Find out what sort of massage is okay. (Patients can be prone to fractures and blood-clotting, so any rubbing must be gentle.)
The sounds that surround. When all the other senses are off-duty, or fading away, hearing can become surprisingly acute. Anyone who has laid in bed at night listening to the drip, drip, drip of a faucet, or the snoring of a mate, or the buzzing of a meandering fly knows this is true. When a person is dying, hearing is usually the last sense to go. Even when people can’t communicate or respond in any way, often they can hear exactly what is said to them right up to the end. They may not comprehend every word, but they can certainly grasp the tone and tenor. This can be unpleasant if a patient must listen to people who are arguing or machines that are beeping or a neighbor who is moaning. But hearing can also be an avenue for profound comfort.
When caring for someone who is gravely ill, remember the importance of sound. Just the ring of familiar voices can bring enormous comfort and relief. When serious illness strikes a loved one, don’t sit glumly or talk about the patient as if he were not present. Read aloud. Tell stories. Converse comfortably and naturally with each other. If no one is near, soothing music or even the sound of certain television shows might offer diversion and relief.
The joy of laughter. When we visit someone who is sick, we tend to be solemn to reflect the severity of the situation. Humor seems not only out of place, but irreverent, disrespectful. But humor is just what the doctor ordered, and according to surveys of dying patients, it is what the patient wants too. Most patients say they would rather have their caregivers be humorous than serious. Quite literally, they want to die laughing. Our somber voices and grave faces further distance the patient from the joy of life and the comfort of friends. Whereas humor—not self-conscious humor that is used to hide our awkwardness, but genuine, joyous, unbridled humor—is uplifting and fortifying. It makes people feel alive, easy, and close to others.
There was much humor in our house when my father lay dying. He was terribly funny—slipping puns into our conversation and making faces at our comments—and we were constantly laughing about one thing or another. I think we had run out of other emotions. The laughter also gave us strength, providing some sanity in an utterly insane situation. Sometimes people would call, very serious and sad, and there would be so much laughter in the background that whoever answered the phone had to cup the phone so the caller wouldn’t hear what was going on. I am sure some of them thought we had lost it. Which I guess we had. Late one night, when my father could no longer speak, we lay on his bed and sprawled on the floor beside him, watching Mary Tyler Moore reruns and laughing so hard we were gasping for air. I can’t imagine a better sound for my father to hear.
A time of growth and grief. Besides benefiting the patient, the time together, the reminiscing, the physical care, the laughter, and any headway that is made toward love and forgiveness is potent drink for the survivors, who have a scorching path of grief ahead of them. The more involved they are in the person’s dying, the easier the grieving process will be, and the potential for growth will be the greatest.
“Just as the dying can ‘grow’ even as they die, so can those who tend them so lovingly,” Dr. Derek Doyle, the medical director of St. Columba’s Hospice in Edinburgh, says in his book Caring for a Dying Relative: A Guide for Families. “They, too, can learn and grow and, in years to come, look back on their time with satisfaction in what they managed to do and wonder at what they learned. Perhaps they saw love in a new light or realized how petty were most of life’s squabbles; perhaps they learned about understanding and reconciliation, of sacrificial caring and of the immense strengths we all have within us, so often untapped and untested…. When we accept this challenge of caring for the dying, we are not merely doing our duty…. We are dedicating ourselves to love in action—ready to receive as much as to give, prepared to learn and even change and be changed.”