When one of your people is thrust into the world of modern medicine—whether you’re standing at a friend or partner’s side as an unanticipated emergency unfolds or accompanying a family member from one appointment to the next—your role is distinct, and it is indispensable.
The following sections will support you in this role, pointing out your rights and showing how you can help the patient and their care team in ways you might not have considered.
I’ll never forget a couple I once worked with on an oncology floor. The patient’s partner would use the pronoun “we” when providing history and medical information to the staff. We started the treatment five years ago. We tried the surgery, but it was ineffective. Maybe it sounds like she was appropriating her partner’s pain, but at the end of the day I found it touching. She was as much our patient as he was; their experiences were bound up.
They say it most often in pediatrics, but it’s true in every specialty: The patient is never just the patient. Shepherding, reassuring, and collaborating with family members are essential parts of any nurse or provider’s job.
I cringe at the thought of someone being denied access to information about their partner’s condition because they aren’t married, or at the thought of friends intimately involved in a patient’s life being dismissed by the care team because they aren’t family in the strict sense of the word. Fortunately, the concept of a nuclear family is becoming obsolete as it relates to caring for the modern patient. Support systems are as diverse as the people they serve, and many care providers now recognize that. The patient defines their family, and providers should follow their lead. As a patient, you are in control of the people looped into your hospital stay, allowed in your room, and updated about your condition.
To make sure your loved ones and support network have access to you and any updates about your condition, ask for a release-of-information (ROI) form when you are admitted, or beforehand, if it’s a planned procedure. You’ll be able to list the names, relationships, and contact information for anyone you’d like involved in your care. This ensures they can get information about your status and can get to you easily if they call the hospital or arrive on the unit.
How to Get Updates in the Hospital
My grandfather was the epitome of an avoidant patient. Up until ninety-two years of age he was still traveling and working, with only a minor health problem here and there. But one day, many years before I became a nurse, he got into bed and didn’t get out for two weeks. My grandmother called to tell me he had a softball-sized tumor in his armpit and was refusing to let her or a doctor look at it. A thousand miles away and in the midst of finals, I insisted he get it looked at. Immediately. At first I pleaded calmly and rationally, then, overwrought, I flew to California. When I finally arrived at their doorstep two days later, my grandmother and I dragged him to the Scripps emergency department ourselves.
Soon I had the relief of many eyes (residents, attendings, nurses) on him, but not a clue as to the diagnosis or the treatment plan. It was complicated—it’s not every day someone lets a tumor grow to the size of a softball when no one is looking. Where are all the doctors from Grey’s Anatomy, going to great lengths to grant his dying wishes and soak up his sage wisdom? I wondered. Rounds, a friend texted. You have to be there for the team rounds. It’s the only way to get an update. Rounds—when surgeons, providers, or teams of residents and attendings visit their patients—happen once per day in a hospital setting.
I waited patiently. I read books by his bed—leaving only to pee and grab boxed salads from the cafeteria. It was, of course, during one of these ten-minute absences that I missed rounds. My grandfather was there, but he was on morphine and as good as drunk. I planned my next day around the team’s visit, but they came hours later than the day before, after I’d already gone home for the night. It took me four days to find out that he had a severely infected hair follicle (and completely unrelated Stage 4 bladder cancer).
The moral of this story? If you don’t understand hospital culture, it’s easy to be left in the dark when a friend, partner, or family member is in the hospital. If you find yourself in this situation, your first and best option is to go to the nurse. They will not be able to disclose test results or a diagnosis if the provider hasn’t been in to see you, but they will certainly have insight. Ask them what tests have been run, what specialists are on the case, and what the plan is for the day ahead. Also ask for a general time frame for when the team will do rounds on the floor that day—they should be able to predict a one- to two-hour window. If you miss rounds, ask the nurse if they can be there, then call the unit later in the evening. By this time, the nurse will have access to new information and can share it with you.
Be sure the patient has signed a release-of-information form for you, and always call the unit before 6:30 p.m. The change of shift happens at 7, and it’s nearly impossible to reach the day nurse after that, while they finish up pressing tasks. Calling after 8 p.m. will get you through to another nurse, but they may be less familiar with the case.
In providing details about a patient’s baseline, advocates can help paint a picture that healthcare providers rarely get access to. More than contextual clues that guide diagnosis, establishing a baseline allows the provider to better understand what’s normal for their patient. Providers are all about trends, or how a person compares to themselves. If a patient’s blood pressure usually runs low compared to the norm, we are less concerned than if we get one very low blood pressure reading during a week of relatively normal vital signs.
It helps immensely when we familiarize ourselves with trends and patterns in a patient’s day-to-day life in their homes and out in the world. This is where family members, friends, and significant others can step in and dramatically change the course of care.
You are uniquely qualified to communicate your loved one’s baseline to the care team. This can include their mental status, their pain, or their ability to complete activities of daily life. When the information is delivered human-to-human, the story carries more weight, sticks with providers more easily, and ensures that the fulcrum of care is the patient themselves and not statistics. Always make a point of giving a clear picture of the patient’s baseline if they cannot do it themselves.
The universe doesn’t ask your permission or review your qualifications before appointing you as someone’s caregiver. Whether you assume the role as an act of unconditional love, out of familial obligation, or because there’s simply no alternative—there’s a point at which your reserves of benevolence, patience, goodwill, and sanity may run dry.
“You can’t care for others unless you care for yourself.” Nurses hear this a lot, and it irks me a little. It’s objectively true, but sometimes it feels downright accusatory, a way to place the onus of responsibility on a person who is already bearing the brunt of responsibility. It’s a coach standing on the hill shouting while Sisyphus rolls the stone up.
But the remark exists for a reason. Nursing has taught me to think of it more as an equation, one that reads: If I stop taking care of myself to take care of someone else, eventually I will not be around to do either. Two lives will be sacrificed (figuratively) to a disease, as opposed to one.
We are conditioned to assume the role of caregiver with immaculate grace and patience, good humor, and a steady disposition. Women, especially, are expected to balance the role effortlessly with other arenas of our lives. The role is glamorized in fiction, and poorly understood by anyone who hasn’t done it. Just like having a disease yourself, being a caregiver is often isolating, especially when it’s done outside of a profession. And there’s not often space to have a breakdown in the context of someone else’s plain-as-day objective distress, even if it’s warranted.
As a nurse, witnessing patients and their loved ones interact each day, I’ve come to see the realities of this role—that it’s at once connective and isolating, loving and boring, fulfilling and exhausting. It’s often hard for a caregiver to recognize when they need help, to then demand that help, and to ultimately feel okay about demanding it (but they’re entitled to a three-act play of falling apart, if that’s what they need.)
If you hit that point while caring for someone in your life, here are some resources that might help:
AARP (http://www.aarp.org/caregiving): The organization has done a massive overhaul of its caregiving portal in recent years, and it is the most robust, helpful constellation of resources out there. It covers everything from local resources for respite care and support groups, to caregiving forums, to health recommendations specifically for caregivers.
Therapy: Just like there are therapists who specialize in chronic pain or relationships, there are therapists who are trained to work with caregivers. A questionnaire called the Modified Caregiver Strain Index, found at the National Center on Caregiving site (http://www.caregiver.org/depression-and-caregiving), can help you determine if you’re approaching or at a point where therapy can help. After completing it, you can search for specialized clinicians.