When my mother died earlier this year, I was able to prepare myself, my family, and my mother, herself, for her death. Difficult health and end-of-life decisions are inevitable and universal for all families. So it’s crucial that doctors offer realistic expectations. Unnecessary treatment is harmful to patients and their families, and bad for health care costs and society as a whole.
In early 2011, Mom suffered for months with worsening joint pains, rashes, and an exhaustive evaluation for a mysterious illness we thought she might have picked up when she was in Ghana working on a health clinic she planned to build there. In the end, she was finally diagnosed with multiple myeloma, a type of blood cell cancer.
After initial treatment, she told us that some of her pain and rash symptoms were improving. However, when she arrived at the airport to visit me in Philadelphia and to spenmd some time at the Shore, she was in dire condition. She needed cane to walk and assistance to travel — much to my surprise, because she hadn’t said anything about the severity of her suffering. There were nights during that visit when she woke me, screaming in pain, and could not get to the bathroom by herself.
My anxiety built as I anticipated the coming years. Watching her leave at the airport back to her “independent” living situation, in a house very ill-suited for a disabled person, tore my heart to bits.
Not long after this visit, she was scheduled for a stem cell transplant. After a rather unpleasant battle with my employer at the time for medical leave, I went to St. Louis, where Mom lived with no family nearby, to provide company and support. She tolerated the chemo well and kept an upbeat attitude. After treatments, my aunt and I got her back home and able to care for herself.
Time for a plan
Knowing our future would be riddled with Mom’s mobility and pain issues, I wanted desperately to move her to a location with more family and social support. I started regular family meetings over the next few years to plan for her decline. My aunt from Texas, my brother from Kansas City, and I convened at various locations in Missouri — Rocheport, St. Louis and in Kansas City.
We encouraged her to identify beneficiaries for her various accounts, to update her will, to have a clear end-of-life values plan, and to generally organize herself for the future. I used my slickest physician-trained techniques and communication skills. My brother, a police officer, brought amazing levity yet firmness to our discussions. However, our mother opted to put off the planning.
For about four years following her diagnosis, with the gracious and often unbelievable assistance of some wonderful neighbors, she continued to live on her own, with me flying out periodically for emergencies. Then, last July, she had a significant decline. Her bones were beginning to fracture, her pain medications had to be optimized during a hospital stay, and she became dependent on blood transfusions to live.
After a few discussions that shamefully required a raised voice, I finally convinced her to move to Philadelphia to be near me so I could manage my career and her care simultaneously. She started to look for places to live.
In my fantasy version of how this would go down, she would find a nice studio apartment in a building with an elevator in a neighborhood convenient to my daily commute across the city. But she had a different idea. She wanted to buy a condominium, without addressing the two homes she already owned, and an exceptionally expensive one at that.
Two months of tension and stress followed as unscrupulous financial and real estate professionals happily introduced her to loans and a contract on a condominium that she could never afford. It blew my mind that a person with less than a six-month life expectancy, no income, and questionable decision making capacity could get a mortgage after the recent housing crisis.
Instead of either of our plans coming to fruition, my mom rapidly began declining in December. Her weight dropped from 100 lbs to 75 lbs. She had emergency room visits for new bone fractures. She had to stop driving, and she needed someone to be with her 24/7.
The wrong call
I went with her to a doctor appointment in early January. We had discussed starting hospice the night before, and I expressed to her my concern that, at best, we had another three to 6 months together. She agreed that hospice sounded appropriate and would allow her to start planning her goodbyes.
Her nurse practitioner walked into the exam room looking at copies of lab work and exclaiming how wonderful it was that her blood cell counts were stable — before she even laid eyes on the emaciated, weakened version of my mother sitting on the exam table. Medical professional 101: Always treat the patient, not the labs.
Then her hematologist came in and immediately started rattling off treatment options before I interrupted him to ask if perhaps we could get a consultation with hospice or palliative care, considering her severe functional decline, immobility and weight loss. He brusquely explained to me that it was not called “palliative care” at their institution. Rather, it was called “supportive care.” And, besides, he explained, as if I didn’t know better, that my mother had many treatment options and he expected to be able to extend her life at least another year. I have never been put in such a terrible position by a fellow professional, nor have I been so angry at one for dismissing my input.
Mom decided to continue with aggressive treatments, including 10 sessions of radiation, which took a lot of time, caused great pain, and ultimately did not reduce her massive doses of pain medication. Then she had another round of chemotherapy. All of this excess treatment was a waste of time, money and a chance to plan for death.
Ready to say goodbye
By the time we finally got her into hospice, she was literally incoherent and completely dependent. With good care, my aunt and I helped her to have a period of about two weeks when she was lucid, albeit bed-bound, during which we made the most amazing gourmet meals, listened to her favorite music, hosted friends and family and said some goodbyes. That time was as rich as it was difficult. And my pride in our efforts to care for her is endless.
There are a few key teaching points in this story. As an academic clinician, I am ruled by teaching points. First, difficult times like these with loved ones are inevitable. We are all vulnerable to the trials of life, and this could be happening to anyone around you at any time.
Second: Realistic prognostication is an indispensable part of what doctors can offer patients and their families. Often during the past few years, I wished I’d had no idea what was going to happen to my mother, but ultimately, even though it caused so much anxiety and was at times a source of conflict, I am glad that I did. It allowed me to prepare myself, prepare the rest of my family, and, when the time came and she was willing to accept it, prepare and support my mother. I mean, who doesn’t want to go out after a couple of weeks of lamb chops, cookies and ice cream?
Third — because I love clichés — sometimes less really is more. Unhelpful and unnecessary treatment is bad for patients, families, medical costs and society.