When I first lay eyes on Marilyn, I don’t think she will survive another week. Eighty-nine years old with short, curly gray hair, she sits in a wheelchair in the examination room. According to the nursing sheet, she weighs one-hundred and nine pounds. She wears a bulky white sweater over a gray dress that seems too big for her tiny body. Her ankles dangle below her dress, swollen due to worsening heart failure. Even though I can tell she is depressed, she manages a smile. Her daughter sits beside her, hands clasped in her lap as she awaits our team’s assessment.
Marilyn has been hospitalized four times in the past year for heart failure. She has had five chest x-rays, three transthoracic echocardiograms, one trans-esophageal echocardiogram, one coronary angiogram, one CT scan of her chest, and open heart surgery to replace her mitral and aortic valves. She has spent many weeks of the past year in convalescent homes. She has been seen thirteen times in the cardiology clinic. She he has not had the strength to walk for over a year.
In a different time, before the advent of modern drugs, tests, and procedures, Marilyn would have been recognized as a woman who is dying, a woman who had lived many years but had now reached the twilight of her life. She would have rested peacefully at home with her family beside her until she passed. Today, however, there is always more we can do. Because we can treat the pieces of Marilyn’s condition, we believe the whole may be salvable. Thus, despite all the care she has received, despite all the doctors and tests and medications, no one has told her she is dying.
My assessment that she is dying is based on a careful review of her condition and the treatment options available. Marilyn has advanced diastolic heart failure and stage III kidney disease. She has chronic anemia and recurrent gastrointestinal bleeding. She is frail, a well-described marker of poor prognosis, and has become more frail with each hospitalization. She frequently develops wet lungs and swollen ankles from heart failure, her condition unresponsive to oral medications at home. Treatment of heart failure for her requires hospitalization and many days of high-dose, intravenous diuretics. This tethers her to an IV pole, restricting mobility, shrinking her already dwindling muscle mass.
It would be very easy for us to tell Marilyn she can be treated. We could recommend a fifth hospitalization for the year, a course that would lead to more tests and medications. She would be unhappy but she would accept our recommendation. She trusts us and looks to us to guide her.
But I do not believe another hospitalization would improve Marilyn’s life in a significant way. I am aware of how costly hospitalization would be, not only in dollars but in time. If we accept that Marilyn has a limited number of days remaining, a fifth hospitalization would force her to spend some of those precious days among strangers, away from home in a sterile hospital room. She would have to remove her clothing, putting on a hospital gown. An intravenous line would be placed, a procedure that has caused pain and bruising for her in the past. Well-intentioned nurses and doctors would cause discomfort by prodding her belly and legs to examine her. In short, she would be dehumanized in her final days. During a time when her life spirit should be celebrated it would instead be marginalized.
We choose a different path. With kindness, compassion, and respect, we tell Marilyn that she is dying. We explain the multiple, advanced conditions affecting her body. We tell her that further curative treatment, while always an option, has a very low likelihood of meaningful results and may make her feel worse. We encourage her to think about her goals. If these are your final days, how do you want to spend them? We explain what hospice means. Although her condition may be terminal, her symptoms can be relieved. She does not have to suffer any longer.
As it turns out, Marilyn is not surprised by what we say. A sharp and intelligent woman, she knows that her aged body is nearing the end. She is thankful for our honesty. Turning from us, she looks longingly at her daughter. She clasps her daughter’s hand in hers and asks to be taken home.
Jason Ryan is a physician and a participant in the 2012 Costs of Care Essay Contest.
Image credit: Shutterstock.com
