[Originally published in Post Alley]— In our time of pandemic, the hackneyed phrase, “a good death,” has come to have new meaning and, yes, a new life, if you will.
Partly it is the thousand deaths in our Washington, and the hundred thousand in the nation. Partly it is the chaos of leadership in the other Washington. Partly it is the pictures: the brave and exhausted nurses and doctors, the grieving and frustrated families, the sheer trauma of the emergency room, the bedside with its tubes and frightening machines.
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We may be entering a new chapter of the “good death” book as a result of the demands of the coronavirus and the price paid overwhelmingly by the old, the sick and the non-white — and their families and caregivers.
“COVID-19 is very likely to have a very significant effect,” on how Americans face end-of-life decisions, says Kim Callinan, CEO of Compassion & Choices, the largest national organization dealing with end-of-life decisions. “These isolated painful deaths have created a far greater awareness of people’s lives, particularly with the drama of media awareness.” Callinan tells me she expects more attention to end-of-life directives that support less-drastic interventions and call for compassionate options that involve family members, often in the home of the stricken.
Beyond the well-documented and harrowing stories of ICU units and grieving families unable to touch or even be with their dying elders, care workers in the end-of-life field are feeling similar — if less dramatic — pressures on their limited resources.
Hospice care is already hard-pressed to keep up with the demands of COVID-19 and the restrictions that come with a virulent virus. For hospice, it’s the very nature of the virus, which puts a heavy emphasis on avoiding contact: masks, gloves and social distancing are required. These rules are “impersonal and counter-intuitive” for hospice care, which has always stressed “touching and family presence for the dying,” says Jodi Newcomer of Whatcom Hospice in Bellingham, which treated 256 patients in April.
Hospice workers must use masks and gloves, as must family members, and such precautions are particularly important if the patient is in a nursing home. As a result, she notes, more families are seeking in-home care, both to restore a more personal approach and also to protect family members from the environment of a nursing home or hospital. Even hospice houses lack the personal touch of a home.
Newcomer says the pandemic has also had an effect on volunteers, who are a big part of hospice care; Whatcom Hospice, which is currently treating about10 patients with COVID-19, has reduced its volunteer force for their own protection. That puts more stress on the professional staff, as does the constant need for personal protection gear. Hospice organizations have complained of shortage of protective devices, but may be getting some relief from the Congressional CARES Act pandemic aid.
While the vast majority of hospice services are delivered at home, hospice care can also be provided in nursing facilities for dying patients who require more intensive medical care or don’t have other social supports. Hospice is the primary reason more Americans are able to die at home today. Yet, only half of Americans who die receive hospice help.
Americans have more options in attempting a “good death” than a few generations ago, but hospice care dates to 1974 and remains the best-known program, with over 4,300 agencies and over 1.4 million patients.
Palliative care, a medical specialty to relieve suffering and improve quality of life, was recognized by the World Health Organization in 1990, but did not emerge as a separate medical specialty in this country until the early years of this century. Today, palliative care is offered in about 75% of hospitals with over 300 beds; the University of Washington has a major center focused on palliative care.
In 1997, Oregon became the first state to enact a “death with dignity” law allowing a dying patient to seek life-ending medicine from a physician. Nine other states (including Washington in 2008) and the District of Columbia now have these laws. The latest state counts show 251 deaths in 2018 in Washington and 188 in 2019 in Oregon from taking the physician-prescribed medication.
All end-of-life options are under stress with the pandemic, and will face examination as health care evolves from COVID-19. Regardless of the option selected, some linkage to hospice care is likely.
End-of-life choices are complex, but some generalizations can be made. A brief outline of these choices was in a pre-pandemic Washington Post article by Samuel P. Harrington, a retired gastroenterologist and author:
“In general, three ways are available where a terminally ill patient can speed up the process of dying without the assistance of someone else. One is by declining (or discontinuing) medical treatments that prolong life without improving the quality of life. …
“Another approach is to refuse to eat or drink. Known as voluntarily stopping eating and drinking, VSED … is an effective technique that takes advantage of the natural tendency for the terminally ill to lose their appetite to the disease process. … Most people slip into a coma in two to four days and pass away in 10 to 14 days.
“The third approach is to take a lethal dose of medication. … The vast majority of terminally ill patients who choose to exit life this way slip into a coma in minutes and die painlessly within hours.”
Because of the swift and deadly progress of COVID-19, state laws allowing medical aid in dying are impractical, however. With the exception of Oregon, all 10 states have a two-week waiting period for a request for life-ending medication. The coronavirus moves too fast, experts in this field agree. State health officials in Oregon and Washington have not seen evidence of any spike in use because of the virus.
Any of Harrington’s choices could involve hospice care, or palliative care and pain management, a relatively new but growing field. Unlike hospice — which is intended for patients with life-expectancy of under six months — palliative care is intended to ease symptoms and side effects of any patient undergoing treatment or recovery from serious or life-threatening illness. Doctors as well as nurses and mental health professionals may be involved, and care could be provided in hospice, home, nursing home or hospital.
Palliative care is a 21st century addition to the medical palette. It is an outgrowth of hospice, but offers a broader scope of practitioners in both physical and mental health, and does not require that a patient have less than six months to live. At the University of Washington, a palliative care center was launched in 2012 for both research and practice.
Although a relatively new field, palliative care is already stretched to serve demand. “Today, there is approximately one palliative care medical professional for every 1,200 people facing serious illness. And, as the baby boomer population ages, there will be a greatly increased need for palliative care both for patients and their families,” according to the Palliative Care Center of Excellence website.
Dr. Randy Curtis, the center’s director, sees some relief from telemedicine, one of the positive developments emerging from the COVID-19 pandemic. “Some of our patients are too sick to come to a clinic,” he notes, but can be served by telemedicine. Curtis, like others dealing with end-of-life issues, sees another important outcome from COVID-19: increased awareness of end-of-life conversations between older adults, family and medical advisors. COVID “makes these conversations even more important,” he told me, long before a patient is headed toward intubation or a ventilator in a hospital. “It’s often hard to have those conversations.” Families will decide the level of care for a patient unable to do so personally, and some form of advanced directive is critical.
The COVID-19 pandemic has brought increased attention to advanced directives, including living wills, power of attorney and Physician Orders for Life-Sustaining Treatment (POLST); the latter is relatively new in Washington and may be a new term for many people. COVID-19 struck a populace unprepared to make decisions regarding the end of life; a 2017 study found that nearly two-thirds of American adults had not completed an advance directive. Local statistics are similar. Among more than 41,000 UW Health patients 65 and older, only 40% have an advance directive in place and only 63% of patients over 85 have one.
The COVID-19 onslaught has raised the stakes for end-of-life planning, simply because it strikes so swiftly — victims may literally be diagnosed and die within a week, leaving precious little time for preparation. As described by Compassion & Choices, “Most people envision that they will die at home, surrounded by their loved ones. There is a certain intimacy to the moment that brings about closure. Families come together, learn what is important to each other and say goodbye. These are precious moments that help to make a difficult time a little bit better. Those who have a severe case of COVID-19 are robbed of this precious goodbye with their loved ones. For many, the last time they see their families in person is the moment they leave for the hospital.”
So, is the conversation about end-of-life simply a matter of the old remedy: “better communication”? Well, that may actually be the case. In an article in Psychology Today, Marilyn Mendoza, Ph.D., a psychiatrist at the Tulane University Medical School asks, “What is a good death?”
Mendoza suggests that “good” may not be the most-useful term; she suggests “respectful” death as a term that may better describe what a patient needs. “A respectful death involves truly listening to the dying and being open and honest with them and the family about the diagnosis and future.
“If there was one word to describe the secret of a good or respectful death, it would be communication. We do not have to be at the end of our life to begin to have open discussions with others about what our wishes are. For example, do we want to die at home? Or does the place matter as long as family is there? Do we want to be kept alive at all costs or do we not want to be resuscitated? Knowing these and other such matters is beneficial for the family and the medical providers. There are many accounts of families not knowing what the dying wanted and having to make agonizing decisions about their care. However, once there is open communication and an understanding of the values and goals of the dying and family, a respectful death can be achieved.”
And there you are: better communication. Backed up, of course, by the proper documents, really dedicated medical and counseling professionals, volunteer helpers and — most importantly, family and loved ones. Maybe the evil coronavirus will help impel us to do better in planning for end-of-life decisions.