University of Pittsburgh psychiatry professor Richard Schulz has been one of the nation’s foremost researchers on caregiving stress for
At my mother’s memorial service, lots of people asked to speak. 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, 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 89th birthday — my mother was diagnosed with a colorectal mass (we would later learn it was cancerous), she restated to me what I 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 in her New York 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. Just days after the initial diagnosis, despite my mother’s long-standing and just-repeated wish, I found myself reluctantly taking the first step toward a life-prolonging surgery.
How had we ever come to even consider this?
The ‘limited’ option
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 96th birthday!” In response, my mother would shudder and reply that she hoped that she would not face a similar fate.
From the instant she learned about the mass, my mother told all the doctors who paraded by that she was really okay 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 her hospitalization wore on, she remained clearheaded and determined.
Nonetheless, on the fourth day in the hospital, a surgeon arrived at my mother’s bedside to discuss the risks and benefits of two surgical options for addressing the threat posed by the mass. One option was to remove the mass, while a second involved rerouting the intestine around the mass. Because the mass was growing slowly, the surgeon explained, and because there was no sign of cancer anywhere else, the mass could be left intact. In fact, the surgeon confidently pronounced my very frail mother an “excellent” candidate for this “limited’ option and predicted a “relatively insignificant recovery time with 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 surgeon assured us that with the new technologies and products that were available, my mother would adjust in no time. While he himself avoided the specifics, we learned this would include her having to change the bag, adjust her diet, perform the necessary skin care and live with anxieties about whether the bag would begin to smell, bulge visibly or soil her clothing.
When I asked what would happen if my mother declined surgery altogether, the surgeon provided a chilling answer. Forgoing surgery would cause her colon to rupture, resulting in sepsis, acute and possibly prolonged abdominal discomfort and eventually excruciating pain. He described in gruesome detail what would happen inside her body to cause this pain. No way would he ever let his mother suffer through that, he pronounced, horrified at the mere thought.
In the face of the surgeon’s unambiguous advice and the certainty he projected, our own certainty wavered. When the surgeon left the room, my mother began to weep silently. Her hope of a dignified death had been dashed. She was facing the possibility of choosing between excruciating pain or being 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 friend who specializes in research on patient engagement. She suggested I further probe 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 might 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 started by investigating the surgeon’s assurances regarding the simple-to-use and odor-free technologies that were available for colostomy patients because I knew that this would be of particular concern to my mother. We faced the added complication that she was reliant on a wheelchair and needed the services of a full-time home attendant who might be called upon to help with a new set of needs.
I called one of my mother’s former health aides, who knew her abilities, limitations and sensitivities at least as well as I did. I trusted her to give me straight answers. I asked whether she had had any experience with colostomy paraphernalia and how she thought my mother would adjust to using it.
While she assured me that Mom would most likely be able to change the bags herself, she immediately 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.”
She went on to describe having cared for an outgoing and sociable retired lawyer who became so self-conscious after 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 her mobility and much of her independence to parkinsonism. Nonetheless, she remained surrounded by many devoted and lively friends. When sitting on the bench in front the apartment building that had been her home for 50 years, a steady stream of neighbors, young and old, would stop to sit and chat. Her apartment door was never locked, so friends constantly popped in to play Scrabble, watch a film or talk politics.
Nonetheless, over the previous five years, my mother had already begun to see her life as irremediably diminished. Aside from the parkinsonism, she was growing extremely frustrated with the gradual cognitive decline associated with normal aging and its impact on her memory and her ability to use her computer, cellphone and other mainstays of modern life. The prospect of social isolation was more than she should have been expected to bear.
The magic words
This bleak outlook strengthened my resolve to learn more about whether palliative care could be effective against the consequences of rejecting further treatment. The following morning, we mentioned to the doctor who was preparing her for discharge that our next step would be to identify a palliative-care specialist who could 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 forgo surgery and offered his unequivocal assurance that any future pain could be effectively managed. He explained that she was eligible for home-based hospice, which would include palliative care. This was the first that we had heard of this program.
I can’t say whether the surgeon who advised us was intentionally engaging in scare tactics. Clearly, his rosy picture of life after surgery and his assessment 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 available through effective palliative care.
Given my mother’s very clear wishes, particularly when coupled with New York’s Palliative Care Information Act — requiring that all patients facing terminal illness be counseled about palliative care and end-of-life options — it is astonishing that the option of hospice with palliative care was not presented to us early in my mother’s hospital stay. 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 her 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, and I have since contemplated what might be done to better support them.
Ideally, all hospitals would have palliative-care teams routinely visit all seriously ill patients and present both palliative-care and hospice options. It would also be immensely helpful if all physicians who treat patients with potentially terminal or significantly life-limiting diagnoses understood palliative care well enough to be able to discuss it comfortably and meaningfully. A fundamental first step will be getting more physicians to accept that they alone may not always know what is best for a patient: A not-yet-published study 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 these 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, looked and felt better than she had in months. She took in several museums. We spent a glorious day at the New York Botanical Garden. Perhaps most fittingly, we held a show of her beautiful watercolors in the community room of her co-op, which was attended by more than 100 neighbors, friends and relatives. Aside from providing a wonderful occasion to bring us all together, the show provided an opportunity for my mother to give back, as she proudly donated the proceeds from the sale of some of her paintings to Morningside Retirement and Health Services, the nonprofit organization whose services had proved invaluable to her and other seniors in her community as they aged in place.
Throughout this period, my mother’s outstanding hospice team delivered on the promise of compassionate, effective palliative care. They were careful to include her, her aides and me in all discussions of her care. They told us what to expect and described developments that might signal the need for a change in regimens. Far from doing nothing, palliative care 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. She lost interest in visitors and phone calls. At one point, 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 growing anxiety and the pain associated with such transfers.
One evening, I woke her from a nap to ask if she wanted dinner. She said she would, so I gave her a dose of morphine in anticipation of moving her to the dinner table. 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 2½ 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 and gently stroked her brow. She 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.
Dina Keller Moss is a senior program analyst at the Agency for Healthcare Research and Quality in Rockville, Md. This article was excerpted from the July issue of Health Affairs and can be read in its entirety at healthaffairs.org.