The right to die and the right to live

Hiding in the shadows behind all of our end-of-life (EOL) discussions about the desire to maintain an acceptable quality of life is the issue of adequate health care, which is basic to a right to live.  Many of us believe that there can be no “life, liberty, and pursuit of happiness” without a right to adequate medical care.  This should be a goal for all of us who support a right to die on our own terms.

Franklin Roosevelt recognized this need for adequate medical care when he proclaimed what he called his Second Bill of Rights, which he announced in his last State of the Union address seventy-five years ago–in 1944.  Among the rights Roosevelt promoted were these:

1.  the right to a good job

2.  the right to be paid enough for working to afford adequate food, clothing, and recreation

3.  the right of farmers to receive fair pay for their produce

4.  the right of every business to be free of unfair competition

5.  the right of every family to a decent home

6.  the right to adequate medical care and an opportunity to achieve good health

7.  the right to be protected from the economic fears of old age, including sickness, accident, and unemployment

8.  the right to a good education

Most of these aspirations are intertwined.  For example, having a good job should include good health care.  But what happens when a person loses a job or changes jobs, whatever the reason, and the new job does not include health care?  What happens when the health insurance company refuses to cover pre-existing conditions or certain treatments or medications?  What if the pay is not enough to afford the insurance deductibles or copays? 

A decent home should be one that is safe from disease or danger.  But what can be done if the water coming into that home is polluted by lead?  Or what happens when vermin carry disease or lead paint is ingested by young children?  These conditions create public health emergencies, which take us back to the need for adequate medical care.

A good education should result in the ability to understand one’s medical options and lead to the ability to communicate effectively with one’s doctors.  And what about doctors, when they accrue enormous debt (for some, hundreds of thousands of dollars) in order to learn and develop the professional skills needed to provide good medical care?  One solution to this problem can be found in the state of Wyoming, where doctors and other medical professionals can reduce or eliminate their medical school debt by working in the state for a set period of time in areas that suffer shortages of medical personnel.  Currently, thirty-three states provide such opportunities.

Medicare, Medicaid, and the Affordable Care Act (ACA) have gone a long way to help reduce the economic fears of old age and provide health care during a person’s younger years, as well as for those who have a disability.  But these three programs have proved inadequate, in spite of health care debate  in this country for three-quarters of a century.  Among the most comprehensive proposals made during this time period were those of President Richard Nixon before Watergate consumed his presidency.

Perhaps because his own family had faced the challenges of inadequate health care in the face of illness and disability, Nixon had great empathy for those needing such care.  He proposed employer mandates (with federal assistance where needed) and special help for the poor, the unemployed, and the disabled, based on their income.  In fact, the ACA follows many, if not most, of Nixon’s ideas.

But we have not yet achieved adequate, affordable health care for close to 30 million Americans, with many more millions unable to access such care because they cannot afford it or it is otherwise unavailable.  A new study, just released by the nonpartisan consumer advocacy group Families USA, found that over 5.4 million people with employer-provided health insurance have lost coverage since the coronavirus pandemic hit the US.  All of these Americans are denied a meaningful right to live.  They are left to suffer, and finally left only with a right to die something less than a good death.

As a Coordinator for Final Exit Network (FEN) for several years, I spoke to scores of people each year who were inquiring about FEN’s Exit Guide program.  Some of these callers were ready to give up on life because they had inadequate medical care or because they had become impoverished by paying medical bills.  When this was apparent, I did my best to find them the resources they needed to keep living.  Most of these people did not qualify for the Exit Guide program, but were having difficulty living non-suffering, meaningful lives.

Those without access to adequate health care represent a cross-section of the country.  The Kaiser Family Foundation reports that 86% of the uninsured are nonelderly adults.  Whites make up the largest group among them at 41%, followed by Hispanics at 37%, and blacks at 14%.

Hospice palliative care is available through most health insurance programs, though Medicaid coverage of hospice varies from state to state.  The 30 million people without health insurance coverage may be denied access to hospice, the most mentioned alternative to hastening one’s death offered by opponents of the right to die, who believe that the suffering hospice can relieve is the primary reason people choose a hastened death.  At least as many people seek a hastened death because the quality of their lives, or what is left of their lives, is unacceptable to them because of their health.

A review of data from Oregon’s medical-assistance-in-dying law shows that quality of life concerns far surpass suffering as a reason for hastening death (at least according to the clinicians who supply these data).  Suffering was a factor in the decisions of just over one-fourth of the cases.  Similar data are not available for FEN clients.  My own experience suggests that most people apply for FEN training and education services because of physical suffering or concern that they have irreversible health problems that will render the quality of their lives unacceptable to them or lead to suffering.  This latter group includes those with irreversible illnesses, such as ALS, dementia, Parkinson’s, Huntington’s, and other neuromuscular and rare conditions.

Whenever we consider goals of human happiness and well-being, we must consider suffering, both physical and existential.  Included in this latter category are concerns about the known effects of irreversible conditions that are likely to cause many people to decide that they don’t want to suffer through those experiences, which render life undesirable or insupportable based on their own values.

Adequate medical care can make life bearable until its natural end for most people.  This obvious fact is a good reason to support universal access to appropriate medical care.  For those for whom there is no amount of medical care that will make a difference in their lives, MAID laws and FEN services can provide the peace of mind and body that they seek.  We should support both a right to die and a right to live.