ED LOWENSTEIN COMMENT: What struck me about the book is the difference about the entire mindset of citizens of the Netherlands and those of the US, for which she presents a historical context. Because they needed to keep away the sea to retain and recapture land, and because this took prolonged and concerted effort, the Dutch had to trust their collective effort and gave the government power and trust. The US has been almost the polar opposite. With respect to the medical system, it has been organized for continuity and trust; again quite to opposite of the US. Because of this trust, the physicians could effectively respond to their patients’ wishes and advocate for a final stage of life that potentially could avoid the worst suffering of “social death,” a concept that was new to me but seems very powerful and valid. IN the US, the fight has been AGAINST the presently distrusted medical establishment.
The chapter about her experiences with her mother and father after returning to the USA put much of this into focus.
My father has seen a lot of death during the half-century since he graduated from medical school in June 1959.
In part because of what he has witnessed, and in part because of his deep commitment to providing ethical care to patients, Dad has, in the past dozen years or so, developed an intellectual and personal passion for end-of-life care issues.
His concern has practical and philosophical dimensions.
In the United States, a highly disproportionate amount of medical resources that people consume occurs within the very last stages of their lives, often at times when the possibility of a meaningful recovery and accompanying high quality of life is all but nonexistent.
In addition to seeing this as a form of medical rationing, Dad has more recently come to the view that these resources could be more effectively and ethically allocated to addressing the social causes of poor medical outcomes.
Beyond this, Dad believes firmly in a patient’s right to determine the course and even experience of his or her inevitable death, and to do so with dignity.
He has acted on his beliefs in a variety of ways: studying the issue closely; writing an evaluation of Oregon’s Death with Dignity Act for one of medicine’s most prestigious journals; and serving on a board of an organization that supports his beliefs on this issue, among others.
It is controversial territory, and perhaps particularly so given Dad’s personal history as a member of the Kindertransport program and our family’s Holocaust history. During its murderous reign, the Nazi government implemented an enormously active and wide-ranging euthanasia program to kill millions of people because it deemed them “life unworthy of life.”
Given this complicated background and our ongoing discussions on the issue, the arrival of Frances Norwood’s The Maintenance of Life: Preventing Social Death through Euthanasia Talk and End-of-Life-Care-Lessons from The Netherlands last night intrigued me.
Although the content and frank tone of Norwood’s work unnerved me at times, I found the book informative and thought-provoking.
As the title suggests, the concept of social death is a fundamental one for Norwood. By social death she means not so much a specific point in time, but the gradual loosening of the social ties that connect people to others and a decreased engagement in the world.
In the Netherlands, this can take the form of lessened independence due to the inability to bike by oneself any longer. Incontinence is another marker of social death for many people, she notes.
An American who spent 15 months in the Netherlands at the beginning of last decade, Norwood writes approvingly of euthanasia’s legality in the country, and, specifically, of the conversations that happen around the end of people’s lives.
Far from being a slippery slope that leads to higher and higher number of deaths, Norwood argues on quantitative and qualitative basis that a low percentage of conversations about euthanasia actually culminate in people going through with that way of ending their lives. This is in part due to the lengthy and formal process one must undergo-an outgrowth, she says, of the Dutch cultural tendency toward overleg, or consultation.
Huisartsen, or ‘house doctors,’ are pivotal figures in these conversations. Norwood explains that these doctors, rather than being the type of adversarial presence that one often sees in the United States, serves often as a mediating hub between the patient, the family, the church and the government.
Norwood sprinkles in case studies throughout the book, which includes chapters about the history of euthanasia in general and in the Netherlands, sections that explore the doctor’s, patient’s and family’s perspectives, and some concluding thoughts about lessons that can be applied here from the Dutch example.
Toward the very end of the book, she also describes her own experience of caring for her mother during the waning days of her life, and then tending to her father during his decline after her mother’s passing.
Norwood makes it clear that she believes there are indeed lessons to be gleaned from the Dutch, but also maintains that these cannot be grafted wholesale from one culture and context to another.
The Maintenance of Life is an outgrowth of Norwood’s doctoral work, and the work’s structure and language bears some of the stiffness that often comes with books that have traveled that route to publication.
Her history of euthanasia, and especially of the United States and the Netherlands, feel a bit thin and incongruent with the depth of her knowledge and insight on the issue in general. To be fair, I have felt this way about other medically based books that try to briefly give a sense of the larger societal context.
And, of course, some will object to Norwood’s premise on religious grounds, among others.
That said, The Maintenance of Life is a strong reminder that how we handle, or often do not confront, end of life issues here is far from inevitable, but rather a series of choices that have profound consequences. Norwood’s work deserves our consideration, while Dad’s gift has earned my gratitude.