During my first year of medical school, in the last year of my father’s life, his oncologist had a difficult discussion with him and my mother- the decision to become do-not-resuscitate (DNR). I remember my mother was taken aback, my father was relieved and I was deeply saddened. However, when I got the call that my father may not make it out of the hospital this last time, I was comforted in knowing that I was armed with my father’s wishes.
Unfortunately, these kinds of conversations between patients and their physicians are a rarity, even in the case of terminal illness. Study after study shows that health care providers are simply not discussing these issues with their patients on a regular basis despite the fact that speaking with health care providers about end-of-life care leads to more desirable outcomes. Further, even in non-terminal disease, there exists a need to discuss these issues as no one really knows what the future holds: an 18 year-old in a car accident or a 50-something year-old with a sudden heart attack. The day can hold any one of a number of life-threatening conditions.
There is a dramatic financial and emotional burden that comes with end-of-life care, both of which are significant reasons for having a discussion before we are actually facing the dilemma. The average Medicare beneficiary with a chronic illness will utilize $46,412 of medical care in the last two years of life with a range of less than $35,000 in North Dakota, South Dakota, and Iowa and closer to $75,000 in New York and California. Many families will face the decision to withdraw care or to place their loved one in a hospice facility, a decision that can be fraught with feelings of guilt and sadness.
When a patient’s wishes are known, the guilt often felt by families is relieved so that they may grieve with the knowledge that they are respecting their loved one’s wishes. A study found that 23% of bereaved family members were not able to recall a discussion of treatment decisions with health care providers and that they desired better communication and pain control during end-of-life care. Another study interviewed family members of 1,587 patients who had died and found that those having an advanced directive were less likely to have a feeding tube or be on a ventilator during the last month of life than those without an advanced directive. Not only do advance directives have the potential to reduce financial burden but they are also capable of improving perceptions of end-of-life care for grieving family members.
The first morning after I had arrived at my father’s bedside in the ICU, the pulmonologist came in to have the conversation that I knew was coming, I asked if I could speak with him. Squatting down to speak to my father who was slumped over in the chair exhausted, I asked him, as I had been trained as a PA and now a medical student, what he understood of the situation. He said, “I am getting ready to pass on.” Those words still take my breath away, as if someone just socked me in the stomach. But with tears in my eyes, I asked what he wanted and he simply said, “To go home.” So we took him home where he passed away surrounded by the people he loved and with his dog on the bed with him. It was the hardest time in my life thus far but it was made infinitely better knowing that we were able to provide for him what he wanted.
There is no one-size-fits-all algorithm for end-of-life care but there is a right answer — one that can be found in an open, honest, and on-going discussion between patients, their family members, and their physicians about their wishes should they become unable to make their own decisions.
I am sharing this very private, intimate moment between me and my father in the hopes that it will encourage others to have the tough conversation. Everyone who is capable of making their own medical decisions should discuss their wishes with their loved ones today: Talk about organ donation, intubation, compressions (CPR), feeding tubes, etc., then share those wishes with your physician.
Physicians: I implore you to first, discuss your wishes with your own family, as we should do what we say. Then have these discussions with every patient that walks through your door. In fact, before I wrote this article, I spoke with my mother about my wishes about organ donation and she was surprised by my wishes!
You never know what may happen to you and this difficult conversation could possibly be the greatest last gift you give to your family.
Christin M. Giordano is a physician assistant and medical student.
