End-of-Life: Do you devise your own demise?

end of life

Talking to your family about how and where you want to die should be at the top of your bucket list, according to a new report by the Institute of Medicine (IOM). The “Dying in America: Improving Quality and Honoring Individual Preferences Near End of Life” report claims that not having an end-of-life plan can lead to extended and preventable hospital stays, astronomic medical bills, and grief and sorrow for all parties involved. It’s quite simple; if you don’t make your wishes known when it’s still early, both your relatives and doctors will instinctively do everything in their power to keep you alive even when it might not be considered living anymore. Conversely, end-of-life palliative and hospice care are linked to improve dignity and quality of life, and patients who receive it may ironically live longer.

Several groups within the palliative care industry agree with the report, saying that hospice care for terminally-ill patients can relieve the financial and emotional load of a family death, and help lower hospital costs. Hospice care can take place at home or in a hospice center, nursing home, or hospital, and entails both medical and palliative elements, as well as psychological and even spiritual support. “Home is less of a physical thing and more of an idea,” The Conversation Project founder Ellen Goodman says. “They (terminally-ill patients) want to die around family and at peace.” president and CEO of the National Hospice and Palliative Care Organization J. Donald Shumacher adds that “if you don't let your loved ones know that you don't want to be in the hospital [at the end of your life] then that is where [you] will end up being. The health care system is set up now in such a way that once you're in the system it's very difficult to stop treatment.”

Back to the report, co-author Dr. Phil Pizzo conveys the idea that the keyword in ‘end-of-life plan’ is plan and not end; that is, you shouldn’t wait until you’re faced with your own mortality to start thinking about how you want to bow out. Dr. Pizzo says that conversations regarding death should be had during life’s peaks, such as weddings, births, and other milestones. Counter-intuitively, it’s the young and healthy and not the old and infirm who should dot their i’s and cross their t’s. People whose lives are being shortened by age, accident or disease are generally not emotionally, mentally, or physically fit to make healthcare decisions and as a result the report says they “will receive acute hospital care from physicians who do not know them”. Meanwhile, young and middle-aged people can suddenly and without warning fall ill or slip into a coma.

By way of example, let’s consider the recent case of Argentinean musician Gustavo Cerati, who died earlier this month after spending four years in a coma.  Without knowing the specifics, it’s rather safe to say that he didn’t have any provisions in place for such a contingency – probably didn’t even give it more than a passing thought for that matter. That’s not a criticism; or rather it is, but one that could leveled at millions of Americans as well. The IOM report pointed out that 70% of the population have not documented or discussed with family when/if a ventilator or feeding tube is to be removed. “The dying process is an inevitability that everyone has to face,” says Schumacher. “When nothing more can be done, comfort is better than aggressive therapy.”  

The report comes at a critical moment when 77 million aging baby boomers near the point – if not already there – where they will need some sort of end-of-life care; either acute care to prolong life or palliative care to ease the transition to the inevitable fate that awaits us all. Furthermore, healthcare costs continue to increase in the country where it is most expensive in the developed world. As it turns out, a 2007 study from Duke University found that hospice care during the last year of life decreases Medicare expenses by $2,309 on average per hospice patient.

The IOM report says that over a quarter of adults have thought little or nothing at all about how they want to end their lives. On the other hand, Shumacher claims that 90% of people say they want to die at home but the majority of them don’t have the chance. Both could be right; as senior vice president for public affairs at the American Health Care Association Greg Crist puts it, “American families today have far more choices than ever before. Yet if they lack awareness and informed places to turn, they could continue to struggle with these critical, important decisions.”

There certainly exists a stigma among healthcare providers and the general public that talking about making preparations for death equals admitting defeat. What’s worse, there is the perception that patients would be putting their lives in the hands of others who would somehow have power over life and death. For instance, the provision that would have seen Medicare reimbursing doctors for having end-of-life conversations was removed from the Affordable Care Act because the GOP thought it was tantamount to government-mandated “death panels.” But even if the provision is re-inserted – as some Congress members are attempting to do – that wouldn’t change the fact that most doctors are neither ready nor willing to have such talks. However, the burden of initiating the discussion is on the practitioners, because as the report highlights, “most people—particularly younger, poorer, minority, and less-educated individuals, do not have these conversations.”  

That is why the IOM recommends that “all clinicians across disciplines and specialties who care for people with advanced serious illness should be competent in basic palliative care, including communication skills, interprofessional collaboration, and symptom management.” In addition to that, the report advises that educational institutions, professional societies, accrediting organizations, certifying bodies, state regulatory agencies, healthcare delivery organizations, academic medical centers, and teaching hospitals should all devote time and resources to instill and encourage the practice of palliative care in professionals such as “physicians, nurses, chaplains, social workers, and others who provide health care to those nearing the end of life.”