End of Life Issues . . . A Public Challenge
With the large cohort of Baby Boomers (those born between 1946-64) reaching “that” age, there has been a renewed focus on end of life issues in general, with specific public, legislative and judicial attention to legalizing a new choice—medical aid in dying (MAID).
Monday, May 21st, 2-4pm,
Santa Fe Community Foundation, 501 Halona Street
End of Life Issues/Medical Aid in Dying: A Practical Overview
Presented by Village Member Barak Wolff, this workshop will explain and engage with participants about the major developments and challenges that shape our current end of life system.
It is no surprise that senior citizens (or “elders” which sounds so much more interesting and sophisticated) use our health care system with more frequency and intensity than younger segments of the population. As the end of life is approached some will choose to have all possible treatments, regardless of risk, chance of success, and/or expense. Others will opt for comfort care and more control over their last months of life, perhaps preferring to be home with family and loved ones. There is no “right” answer! It is a matter of personal choice as supported by both state and federal patient self-determination laws, and there is a full continuum of options to choose from.
Ideally each of us (and our loved ones) will engage in advanced care planning throughout our life span, including when we leave home, marry, have children, become ill or injured and so on. Such planning is critical if we are to have the kind of death we seek, which seems like an appropriate aspiration, at least to this leading edge baby boomer. And, of course, our choices will change over time as our lives evolve. We can (and probably should) reconsider our choices as circumstances change. These advance care planning decisions should be discussed with loved ones, health care providers, and designated health care decision-makers, and then written down as advance directives, values inventory, and other medical and physician orders such as the New Mexico Medical Order for Scope of Treatment (NMMOST).
From there it is up to the health care system to respond accordingly, and to respect and honor these choices as the highest priority of care. Levels of treatment should be fully explained to patients, families, and designated decision-makers so that informed choices can be made. When indicated and informed consent given, advanced treatments should be accompanied by early palliative care to reduce and mitigate any negative side effects and to ensure frank discussions about priorities and choices that may lie ahead.
At any point that a patient (or surrogate) changes from seeking cure to focusing on end of life care, early referral to hospice should be initiated as quickly as possible. Hospice provides a full range of supportive care and services to patients and families at the end of life, consistent with their advance directives, and is fully covered by Medicare. Palliative care continues to be an integral part of hospice helping to ensure maximum comfort and thoughtful decisions.
In a related development, medical aid in dying refers to the practice of allowing a competent, terminally ill person (formally diagnosed with less than six months to live) to request and obtain a prescription for lethal medication from a willing physician in order to control the time and manner of their death, if they choose to take the medication. This medical practice has been legal in Oregon since 1997, Washington State since 2009, and more recently Montana (via a Supreme Court decision), Vermont, California and Hawaii. Data shows that MAID is used infrequently (less than ¼ of 1% of all deaths in Oregon) and that those who choose MAID tend to be white, insured, well-educated, and enrolled in hospice.
Due to growing public awareness and demand, in 2015 about 25 states initiated legislative campaigns to legalize MAID. Only California succeeded, but because of its size, an additional 44 million people had access to MAID, bringing the national total to 52 million or about 20% of the US population. In 2017 there were once again many state legislative initiatives, including our impactful, albeit unsuccessful, effort here in NM. Many of these will be reintroduced and debated in subsequent years, including our NM End of Life Options Act. These bills, all based upon the landmark Oregon legislation, contain significant requirements and protections to ensure that Medical Aid in Dying laws are safe and effective.
Medical Aid in Dying clearly represents a significant societal shift and there is strong opposition from some religious groups, right to life advocates, some members of the disability community, and others. Strong concerns about devaluing life, irreversible diagnostic mistakes, the potential for abuse, and a “slippery slope” are all aspects for discussion and debate. MAID is an emotional and compelling issue for which momentum is building and that will be with us for years to come.
From a public health perspective what seems to be most important is that Medical Aid in Dying appears to enhance the overall system of end of life choices and care. More people accomplish advance care planning, palliative care is utilized more fully, and hospice is accessed earlier in the process. Most importantly, because these challenging issues have been publicly debated and discussed, it seems that the various components of the healthcare and social service systems collaborate more fully to meet the wishes of patients at the end of life, and that is a public health success!
Barak Wolff, an active member of Santa Fe Villages, is a “mostly retired” public health worker and leader in New Mexico who serves as a policy analyst for the NM Senate Public Affairs Committee when the legislature is in formal session. For the last six years Barak has become deeply involved in end-of-life issues learning, writing, speaking and advocating so that more people have the kind of death they seek.