When All is Said and Done

“When all is said and done,” I counsel a son, daughter or a spouse, “you live with the decisions you’ve made while caring for a family member.” This is particularly true as the end of life approaches. Decisions weigh heavy. A little more time to see if there is improvement?  Advanced medical technology?  A feeding tube because you cannot let mom starve to death? I am not addressing the pros and cons of these decisions, but the afterlife. Not a spouse’s or a parent’s…ours.

 Two recent unrelated situations are the impetus for this writing. The latter situation hinging on the first. Years of experience have helped me to recognize when the end is near.  In the initial situation, I knew that the complication of a stroke was bringing a father’s life to a finale. Even if he did survive the quality of his life would be totally unacceptable to him. But who am I to take hope and faith away from a distraught daughter? I encouraged her to do what was reasonable.  She was not talking aggressive testing, but enough to know if there was the possibility for some improvement.  When the tests showed little chance of recovery, she contacted hospice. Her father died days later. It is too early to know how she feels about the decisions she made just weeks ago.

But this is not the situation for Paul. The other person on whom this hinged sequence rests.  Paul is not a client but a grade school friend whom I recently had the opportunity to see after many years. He told me about the death of his wife some nine months ago. He described all he had done for his wife over the last three years of her life. Not to boast but by way of explaining his next statement.  When hope was replaced by constant hospitalizations, tubes threading through her body, and veins diminished by constant punctures, she said to her husband she was ready to say good-bye.  “I did everything I could for my wife, I was totally devoted to her, I lived my life for her. I have no guilt now, I have a sense of freedom. She is at peace, and what I did for her has brought me peace without guilt.”

Thomas Mann in his book, The Magic Mountain, wrote, “A man’s dying is more the survivors’ affair than his own.” As this geriatric care manager counseled Patrice and listened to Paul, she realized just how important our decisions and actions are. Not just in the moment but for years that lie before each of us.

An Introspective Response to a Frequently Asked Question

Below, is an article that appeared in the August 1 online edition of The New York Times”Well” column edited by Tara Parker Pope. The question is a frequently asked one. But what I found outstanding was the response of the physician. Blending the best of medicine with the Being of the patient.
 
By HAIDER JAVED WARRAICH, M.D.

The other residents and I sat in our blue scrubs with our attending physician in the windowless family meeting room just outside the intensive care unit. We had gathered around one end of the ovoid table with the family of the patient, two daughters and a son, at the other.

The patient was an elderly woman, admitted to our unit just a few hours before, with a breathing machine keeping her alive. We proceeded with the meeting as we were trained to do. We kept our elbows off the table, maintained eye contact (but not too much eye contact) and gave the family an update of where we stood.

A healthy family meeting, we’d been told, involved us speaking for about half the time, with the family speaking for the rest – venting, questioning, grieving and hoping, in no particular order. This meeting, though, was dominated by long periods of silence that unearthed the dull, low-pitched drone in the background.

The son, quiet for most of the meeting, broke the silence and, with a hint of anger and a big dollop of frustration, asked the one question I had dreaded being asked the most: “Doc, give it to me straight. If this were your mother, what would you do?”

While the patient-doctor interaction varies widely across cultures and continents, this question seems to be a universal constant. As a medical student in Pakistan, I had heard it often, and even after hours of preparation, never felt prepared to answer. As a wobbly newcomer to clinical medicine, it left me feeling vulnerable and violated.

From a patient or family member’s perspective, though, this question helps them make sense of the confusion, desolation and powerlessness that so often defines the hospital experience, which usually involves a full-on assault of numbers, jargon and ‘expert’ opinion. They are confronted with difficult choices, like whether they want to go ahead with a particular high-risk procedure or wait for the tincture of time to kick in.

Overwhelmed and confused, it makes sense they would defer the choice to someone who appears to know what they are doing. And by invoking the physician’s parent, they hope to humanize the physician and have a conversation with real stakes.

Yet I still find this question hard to answer. See, my mother is the sort of person who spends two hours each day on the treadmill, even during vacations, so that she can eat to her heart’s content. Often described as a “fighter,” any additional moment she could spend with her children or future grandchildren would be worth the extra mile. My father, on the other hand, is someone who avoids getting his blood sugar level tested to evade medications, dreaming of spending his last days in the quiet serenity of the village he grew up in. Thus my answer to the question would be very different, as it would be for anyone, depending on which parent you asked me about.

So I have come to believe that the right answer to the question, “If this were your mother, doctor…” is: “Tell me more about your mother.”

This response gives patients’ families the chance to think about their loved ones, about what they would value and what they would consider a good life, what they would think was worth fighting for if they were available to answer the question for themselves.

The burden that family members feel when making medical decisions as proxies, whether a loved one has dementia or is so sick or confused they can’t participate meaningfully in decision making, is immense. But this response often helps to diffuse that. It takes them away from a place where they feel solely responsible for the trajectory of their relative’s life to one where they simply communicate what the patient would want out of their life. We as physicians can then weigh in on whether it is reasonable to expect that to happen.

So I asked the family who was sitting across the table from me, “Tell me more about your mother.”

And then, slowly, the family started sharing stories of the woman we had met only met a few hours before, unconscious and intubated. She loved being independent, would hate for people to open doors for her or hold her hand as she tried to get up, they told us. She loved the sun, the beach. She loved walking, loved being out and about. She would never, ever want to go to a nursing home. Never ever. They pulled out a picture of her lounging on a chair, sipping lemonade.

We then told them that based on a combination of her vital signs and lab values, as well as our clinical judgment, that while we could hope for some progress, it would likely not be enough to allow her any real shot at experiencing life outside a nursing facility again.

The daughters shared another glance with their brother. Their shoulders were now less tense, their eyes less teary. The room seemed to be filled with memories of a woman who had lived life well. They turned to us and asked us to make her comfortable, and to turn off the breathing machine.

Haider Javed Warraich is a resident in internal medicine and Katherine Swan Ginsburg Fellow in Humanism at the Beth Israel Deaconess Medical Center in Boston and author of the novel “Auras of the Jinn.”