Myths and misconceptions about end-of-life care and laws

Canada took the plunge. Last week, Prime Minister Justin Trudeau’s government introduced legislation allowing physicians and families to assist people with “serious and incurable illnesses” to hasten their own deaths. If the bill passes, Canada adds its name to places in the world with some form of death-with-dignity rights.

{mosads}But don’t pack yet. The new Canadian proposal limits physician assistance to citizens and residents who participate in Canada’s national health system, and to consenting adults with two physicians confirming that “natural death has become reasonably foreseeable, taking into account all of their medical circumstances.” Once you comply with those safeguards, the waiting period for life-ending medication can be up to 15 days.

What is striking about the proposed law is how it came about. Last year, the Canadian Supreme Court unanimously ruled that it is unconstitutional to deny the option of assisted death to consenting adults with life-threatening medical conditions. Canada’s move adds fervor and urgency to America’s internal debate over the values and “systems” that govern when the end of life is in sight.

Americans don’t like talking about dying, let alone legislating about it, even though the only certain things in life are death and taxes. Unlike taxes, death is a taboo subject in America — an uncomfortable, often avoided conversation. We are all going there some way or another, so why not demystify the process, expose obstacles and dispel misconceptions that, sadly, can end up challenging our fondest hopes and values?

One misconception is that “advanced directives” will be adhered to in all circumstances and in all settings. Increasingly, we are encouraged to sign a document outlining wishes for urgent or end-of-life care, particularly if entering a hospital. The hidden presumption is that an advanced directive will protect us in situations where we cannot make decisions.

Well, not exactly.

In the end stages of life, many people find themselves in nursing homes, hospitals or assisted living, particularly if a progressive illness limits mobility or cognitive thought. Despite the fact that the vast majority of Americans — 70 percent — express a preference to die at home, the truth is that most end up in an institutional setting. In some of those settings, the provider is required to address the residents’ medical issues, thereby prolonging life. Regulations may impede a patient’s desire to hasten death. Simple things like calling 911 for a terminal patient who wants to die at home may leave them inside a system with its own rules or lead to prolonged hospitalization and limited choice. Insisting that a dying person accept food, water and medication could, inadvertently, challenge hopes to slip away sooner.

None of this suggests that advanced directives are not worthwhile. They are a good first step, particularly if planned far in advance and utilized in an acute hospital setting. (And they don’t require a lawyer to sign.) For some, an advanced directive may protect against intervention of “heroic” care or “extraordinary measures” if an emergency happens leading to intensive care where life support, feeding tubes and other medical interventions are used. But for those with long, chronic illnesses like Alzheimer’s disease or other forms of dementia who end up in a facility, the advanced directive does not necessarily help a patient hasten death.

Take the case of Washington-area lawyer John Rehm, who died in June 2014 in an assisted living facility receiving hospice care in the latter stages of Parkinson’s disease. As described by his wife, radio journalist Diane Rehm, in her new book “On My Own,” John Rehm “began his withdrawal from life” when he choose to refuse food, water and medication. It was his only option, as Maryland does not recognize any legal or court-sanctioned assistance with dying — something only a handful of states with so-called “death with dignity” or “assisted suicide” rights have. His family and physician were unable to help him with a clearly stated choice. As Diane Rehm writes, “I rage at a system that would not allow John to be helped toward his own death.”

Part of the mythology of death is that we all get palliative care or hospice at the end of life. But millions of Americans lack access to the kind of palliative care that could improve quality of life by relieving pain and other symptoms. According to a new report in the Journal of Palliative Medicine, far fewer hospitals have palliative care programs than presumed. In small hospitals, with less than 300 beds, only 56 percent offer palliative care programs, whereas it is offered in 90 percent of hospitals with at least 300 beds.

What might matter are taxes. In addition to hospital size, the report found that an institution’s tax status could be a significant predictor of access to palliative care. Not-for-profit and public hospitals were, respectively, 4.8 times and 7.1 times more likely to have a palliative care program than for-profit hospitals, the study found. Regional variation in palliative care was also pretty disheartening. In New England, 88 percent of hospitals had palliative care programs, as did 77 percent of hospitals in the Pacific and Mid-Atlantic states. In the South-Central regions, slightly more than 40 percent of hospitals had such programs. And not every rural community has a hospital close enough to be convenient for palliative care, even if it exists.

Despite what we think, the United States does not have the full continuum of end-of-life care available, especially for a terminally ill but mentally competent person, unless you live in one of the five states granting permission to hasten death.

A common argument against assistance with dying is that it is a slippery slope that will inevitably lead to abuse or reckless abandonment or denial of care against someone’s wishes. But within every piece of legislation in the handful of states that have it is a long series of safeguards ensuring that an individual is within the time period of terminal illness, is of sound mind to make the decision, complies with waiting periods and residency requirements, has discussed the issue with family and physician, and fully understands the choices.

Canada is wrestling with these issues. So should we. Truth be told, there is no slippery slope. The only slope is the long, difficult slide that may happen in the absence of choice. That is a reason to start talking.

Sonenshine is former under secretary of State for public diplomacy and public affairs and lectures at George Washington University. Feinstein is a grief counselor and health expert and served as associate administrator at the Department of Health and Human Services.