Dying: You Have One Chance to Get It Right
First, some numbers.
In 1962, 71% of women ages 15 to 44 married. By 2019 this number was down to 42%.
In 1962, 5% of women ages 30 to 34 had never been married. By 2019, this is 35%.
The percentage of births to unmarried women has risen from 5% in 1960 to 40% in 2018.
In 1970 85% of children lived with two parents. By 2019, this was down to 70%.
Why should you be concerned about these numbers? From a typical biblical perspective, this is not a healthy sign about what happened to our culture. People aren’t marrying. Unmarried women are having children, and children are growing up with one parent, not two. I make no judgment here. For those from a more secular background the practical results are not good.
For you—and from my perspective as an end-of-life specialist board-certified in hospice medicine and palliative care—who will be at your bedside? Who will make your final decisions?
Until several decades ago if a patient were dying with a terminal illness, there would be quite often an informal gathering of the spouse and first-degree relatives around the bedside. Children, grandchildren, spouses, siblings. And there would be a heartfelt discussion typically with the primary care physician about the pros and the cons and the alternatives of continuing the patient on life support. In general, the primary care physician knew the patient, knew the family, and was a trusted member of the community.
The overarching theme was to do the right thing for the patient. If the physician and the spouse and the relatives agreed, treatment would be continued if there was even a remote chance of benefit. On the other hand, most individuals recognized the issue of “futility” and rarely was there a knockdown, drag-out dissertation about what should be done.
But now let us fast-forward the tape to an all-too-common scenario.
End-of-Life Discussion 101
The patient is a fifty-five-year-old homemaker from Tucson. She had struggled with alcoholism and was now enduring liver failure complicated by pneumonia and overwhelming infection. There is no reasonable or realistic probability of survival. The patient is on a respirator.
Around the bedside in the intensive care unit sits the patient’s long-time male partner, her adult children, stepchildren, and their partners, and there is the late arrival of the patient’s husband. The patient and this man separated years ago but were never formally divorced.
A family conference is held in a quiet room with the head of the patient’s primary intensive care unit service, nurses, chaplain, social workers, and resident physician, interns, and fellows (this is a teaching hospital).
The attending physician sets the stage of “where we are” and meticulously outlines the pros and the cons and the risks and the benefits of continuing the current management or deescalating the care. On some occasions pertinent aspects of the medical records are copied and shared with the family. There is total transparency of the patient’s care.
There is a clear consensus among the family that the patient would not want to be maintained in this state and would not want to have artificial means to sustain her (the respirator). Nevertheless, the patient’s spouse (who holds legal standing) vehemently protests that life should be maintained at all costs and that care should be continued.
No one in the room knows about any living wills, which designate who speaks for the patient, and no one can recall a conversation with the patient about what she might want done should she be in this dire situation.
Many of the individuals around the bedside barely know each other, and this becomes an environment of misinformation, mistrust, and hidden agendas about substantial financial and estate issues. This bitterness and contentious demeanor would’ve been unthinkable a generation ago. But today, such scenes have become increasingly common as ex-wives and ex-husbands, half siblings who never knew each other, long-time same-sex partners (surprise, who knew?), in-laws, out-laws show up at the bedside.
The “solution” can be elusive, complicated, but one step in a reasonable direction is to bring on board representatives of the hospice and palliative care community. That’s where I would often be called in.
We are trained specialists who understand the nuances and the dynamics of complex family relationships and can provide a GPS, a map to guide the family through difficult decisions like this. There is no shortcut, there is no second chance to get it right, but this is one reasonable approach in a volatile environment.
Every patient (if they can verbalize) and every family has the right to request the input of the end-of-life specialist. These individuals act as a translator to reframe and clarify the technical details of care so that the patient if they are conscious and the family members can make an informed decision about care.
These conversations can be exhausting, and to prolong the family meeting more than approximately forty-five minutes at one sitting becomes counterproductive. The hospice and palliative medicine team sets the stage, honors the questions and concerns of multiple family members, and helps them on a very difficult journey.
Of course, smart patients have dotted all the i’s and executed a living will spelling out their end-of-life wishes and designated a healthcare surrogate to carry out those wishes well in advance of any bedside melodrama.
I offer more answers to the most-asked patient questions at the end of life in my book, Farewell: Vital Questions and Candid Answers from a Leading Palliative and Hospice Physician, and I invite you to read it.