The Institute of Medicine has issued two previous reports on issues related to end-of-life care, the first in 1997, Approaching Death: Improving Care at the End of Life, followed in 2003 with When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families. Their latest report, issued this year and available in Prepublication form, is Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life.
From the front matter of the report is this explanation.
The controversy on this topic [end-of-life options] and the political desire to avoid it do not alter the fact that every person will face the end of life one day, and many have had hard experience with the final days of a parent, a spouse, a child, a sibling, another relative, or a dear friend. At a time when public leaders hesitate to speak on a subject that is profoundly consequential for the health and well-being of all Americans, it is incumbent on others to examine the facts dispassionately, assess what can be done to make those final days better, and promote a reasoned and respectful public discourse on the subject.
The report refers to the fact that while end-of-life is inevitable, and, for all but the few who die as a result of accidents or trauma, death comes as a result of one or more diseases that require careful management over weeks, months, and even years. Often the diseases bring on diminished cognitive functions, making it difficult or even impossible for family members and those caring for the individual to know the wishes of the person receiving care. When discussions haven’t taken place earlier, at a time when all individuals are able to express clearly what is desired during those final days, the decisions made are based on assumptions, unspoken fears, and even unrealistic hopes for recovery.
When I first went overseas to work for the U.S. Department of State as a Foreign Service Officer, I was advised to talk with my parents and other family members about what I wanted done if something should happen to me while I was overseas. One of my colleagues did and after that conversation she encouraged each of us even more strongly to hold those conversations. She told her parents that if she should die while overseas, she wanted to be cremated and her urn sent back to her family. When her father objected that he wouldn’t be able to accept her death without being able to see her face in a coffin, she changed her mind and agreed with her parents. Even that reason for holding a conversation with my parents wasn’t persuasive, so strong was the fear that talking about death was too close to inviting it.
The IOM report contains five recommendations, in the areas of care delivery, clinician-patient communication and advance care planning, professional education and development, policies and payment systems, and public education and engagement, which the report authors say collectively offer a roadmap for progress in the nation’s approach to end-of-life care and management. The recommendations boil down to: more resources to provide palliative and hospice care, encouragement for doctors and other health professionals to talk with patients about options for end-of-life care, providing incentives to pay care-givers to provide palliative care for patients with advanced serious illnesses outside of a hospital, and requirements for greater training in palliative care for all health professionals.
More than 25% of Americans, including those over 75 years of age, have not given thought to how they would like to spend their last days. Not even 25% of Americans have put their wishes in writing. Yet we all worry about being a burden on those around us, especially financially as we hear again and again that the difference between a comfortable life and bankruptcy is a lost job or a serious illness. Coupled with the fact that by the year 2050 the population of elderly in the United States will have doubled what it was in 2005, according to Pew Research , how can we not acknowledge the need for informing the elderly – and their family members – that there are options to costly surgeries and treatments intended to prolong life without considering what the quality of that life will?
My parents got the thinking started when they sent each of us children copies of their wills, powers of attorney, and advanced medical directives so that we would all know what their wishes were and why they had designated my brother as their power of attorney (he was the youngest, but he lived nearest them).
Then my husband furthered my thinking when we sat down with a lawyer many years ago to draw up our wills. He insisted more strenuously than I thought necessary that he did not want extraordinary measures should he suffer a catastrophic illness or accident. It wasn’t so easy for me to agree that his wishes were mine. But by the time we had to go through that process yet again, now that we are live in a different state and we have a grandchild we wish to provide for as well, I had had time to think about it and to conclude what needed to be put into writing to ensure, if accident or trauma do not intervene, I will experience a good death. I will use my time to say I love you to those I love, to thank those around me for all they have done for me, to ask for forgiveness from anyone I know I have wronged, and to forgive anyone who has wronged me. I won’t need more time than that, especially if I don’t even know where I am or who those around me are.
In the words of the IOM report, “A palliative approach can offer patients near the end of life and their families the best chance of maintaining the highest possible quality of life for the longest possible time.”
 R9, Introduction to Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life, National Academies Press, 2014, prepublication version.