The COVID-19 pandemic has exposed the tragedy of patients dying in isolation, separated from family and friends to limit infection in hospital settings. The process has altered the experience of serious illness for patients and their loved ones, including their ability to grieve, share important words and feelings, and provide comfort. The ongoing pandemic has been a reminder of the importance of having human connection and support at any time, but especially when faced with serious illness, and the essential contribution palliative care makes in supporting human connection while reducing patients’ physical, emotional, and spiritual suffering.
For nearly 4 decades, Diane E. Meier, MD, FACP, FAAHPM, Director Emerita and Strategic Medical Advisor, Center to Advance Palliative Care; Co-Director, Patty and Joy Baker National Palliative Care Center; Professor, Department of Geriatrics and Palliative Medicine; and Catherine Gaisman Professor of Medical Ethics, Icahn School of Medicine at Mount Sinai in New York City, has made palliative care and geriatric medicine the centerpiece of her medical career. In 1997, Dr. Meier founded the Hertzberg Palliative Care Institute at Mount Sinai, which aims to improve the quality of life for seriously ill patients and their families. She is the recipient of numerous awards for her contributions in shaping the field of palliative medicine to address the unmet physical and psychosocial needs of patients in both early and late stages of disease, including a MacArthur Foundation Fellowship and an American Academy of Hospice and Palliative Medicine Lifetime Achievement Award.
Recently, The ASCO Post talked with Dr. Meier about some of the most concerning issues confronting the field of oncology, including the impact of the ongoing COVID-19 pandemic on palliative medicine; racial inequities in the receipt of palliative care; and the controversy surrounding physician-assisted suicide.
It is so important to provide palliative care at the same time as all other appropriate medical care, establishing relationships and trust right from the point of diagnosis.— Diane E. Meier, MD, FACP, FAAHPM
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Shining a Light on the Need for Palliative Medicine
Has the COVID-19 pandemic and the isolation it has brought to patients with cancer and other serious illnesses elevated the role of palliative medicine in patient care and focused attention on the importance of providing a human connection in medicine?
Globally, I would say the pandemic has exponentially increased awareness of the importance of—indeed the essential role of—palliative care in taking care of people with serious illness. Across the country, palliative care teams have been at the table with senior leadership, planning how to respond to the pandemic. They also have markedly expanded their role from being a consultation service to being embedded with staff in the intensive care unit and in the emergency department, because the need for palliative care in both settings is so high.
The pandemic has also enabled oncologists, cardiologists, neurologists, and intensivists, who were doing everything they could to treat disease and prolong life but were so stretched and overwhelmed they couldn’t spend time sitting and talking with patients and their loved ones, to partner with palliative care physicians whose job is to do just that. I think having that backup enabled many of our colleagues to feel like patients were getting the care they needed, even if they couldn’t do it themselves because of the intense time constraints and overwhelming patient volumes.
A big part of what palliative care teams do is what my colleagues call “coming alongside” to help care for seriously ill patients. It takes a team to take care of very sick patients. There is no one single specialty or individual who can do it well alone.
Overcoming Inequities in Providing Palliative Care
A recent study found that although clinical guidelines1 emphasize ensuring palliative care for patients with serious illnesses, minority women with ovarian cancer are twice as likely to receive aggressive end-of-life care compared with White women.2 Why are there inequities in the use of palliative care for minority patients with cancer? Is it because physicians are not offering the service to minority patients, or are minority patients hesitant about using palliative care services for fear they won’t receive life-saving treatment?
Like all important questions, the answer is “it depends.” Part of the problem is that health-care systems or hospitals that are underresourced may have no or inadequate palliative care capacity. So, access to palliative care capacity is a huge issue. Minorities very often receive care in health-care systems or hospitals that are underresourced, and palliative care may be so constrained from a staffing standpoint that all they are able to do is take care of patients who are acutely symptomatic or actively dying.
This is a problem not just in minority communities. There are parts of the country, for example in the South, where access to palliative care is much less. In addition, access to palliative care is also less in for-profit hospitals than it is in nonprofit hospitals, so there is variability all over the country.
To answer the second part of your question, many minority patients are accustomed to casual as well as overt racism, in almost every social interaction they have. This is also true of our health-care system, so they are starting with a profound lack of trust. Once you have the feeling that the health-care system is not interested in you and sees you as less than a fellow human and as a financial burden, you are on high alert; what these people are offering you may not be in your best interest but may instead be in the best interest of the health-care system.
When these patients are offered options that appear to be black/white, yes/no choices—yes, you can try fourth-line chemotherapy or no fourth-line chemotherapy and palliative care—it feels like a triage decision rather than an added layer of support while patients try fourth-line treatment and need help with their anxiety, depression, pain, and family caregiver needs. When palliative care is presented as a consolation prize, it feels like less care, as opposed to the recognition that this is how we deliver quality care for people with serious illness, whether the disease is curable, manageable for a long period, or progressing, including those with cancer. I think some of the fault lies with how palliative care is often described and offered by oncologists and others as “this is what we do when there’s nothing more we can do,” so it feels to the patient like abandonment by the oncologist.
This is part of why it is so important to provide palliative care at the same time as all other appropriate medical care, establishing relationships and trust right from the point of diagnosis.
GUEST EDITOR
Jamie H. Von Roenn, MD, FASCO
Addressing the evolving needs of cancer survivors at various stages of their illness and care, Palliative Care in Oncology is guest edited by Jamie H. Von Roenn, MD, FASCO. Dr. Von Roenn is ASCO’s Vice President of Education, Science, and Professional Development.
Protecting the Most Vulnerable Among Us
In your editorial in JAMA Internal Medicine,3 you discuss the slippery slope of believing that unbearable suffering is inevitable and unmanageable and therefore should be met by a willingness on the part of physicians to hasten a patient’s death. What are your concerns about physician-assisted death, and shouldn’t patients have the right to determine how they want to die?
My position on this issue is nuanced and has evolved a lot over the past 30 years. By nuanced I mean that I respect people’s right to self-determination, their right to determine when the burdens of life are no longer worth it, and when death is preferable to continued life. I respect that no one can make that decision for anyone else.
However, I am very concerned that we are unrolling a public policy that broadly applies and gives all physicians the legal right to prescribe medications to help people end their lives. These laws are predicated on a naive belief that regulation can control that process in a manner that prevents abuse. That is the point I was trying to make in the editorial. It’s not the fact that there might be a moral value to enabling people to control the timing of their death, but what good public policy also must do is protect the most vulnerable among us.
All you have to do is look at the data from Holland, and increasingly Canada, where physician-aid-in-dying is legal. These data show that physicians must now follow only the vaguest due-care criteria—for example, both the physician and the patient have reached the conclusion that there is no other reasonable alternative—before administering euthanasia or physician-assisted suicide. In this scenario, offering medical-aid-in-dying—to a patient who has not requested it—may be seen as a solution when the costs of continued care are high.
For example, there is a case in Canada of a young man in his 20s or 30s with neurodegenerative disease. He is cognitively intact but needs 24-hour care to enable him to go home. The health-care system will not pay for round-the-clock home care, so he is stuck in the hospital. Clearly, the hospital cannot afford to provide that care either when limited resources might better go to someone who can benefit from being in the hospital. Because there is no funding for at-home care, he was offered physician-aid-in-dying.
Here is a patient who can’t move and can’t take care of himself. The people in the hospital, who are supposed to be on his side and are supposed to be advocating for what is best for him, are offering him a way to kill himself. It is not difficult to see how this situation could happen more and more if physician-assisted death legislation spreads across more states in this country. (Editor’s Note: As of April 2021, nine states, including California, Colorado, Hawaii, Maine, New Jersey, New Mexico, Oregon, Vermont, and Washington, as well as the District of Columbia, have passed aid-in-dying statutes. In Montana, physician-assisted dying has been legal by State Supreme Court ruling since 2009.4)
We have a rapidly aging population, a rapidly growing group of people who are highly functional but cognitively impaired. It is expensive to take care of these people, it is burdensome on family caregivers, and now we are giving physicians the power of prescribing medications to end a person’s life. Anyone who takes care of patients knows that families exert a tremendous amount of influence over the care physicians provide. If family members are angry and insistent that the patient never wanted to live in an incapacitated state, it is difficult to resist that kind of pressure. Keeping physician-assisted death illegal against these kinds of pressures and coercion protects vulnerable patients.
Then, should we depend on society to provide the public policies and resources for those suffering unbearably from debilitating disease or incapacitating infirmity?
People have said to me, “That is all well and good for you to say that we should come up with infinite resources to provide humanistic and compassionate care for people like the young Canadian man stuck in the hospital, but that’s not going to happen, so what do you say in the meantime? Should such people be left to suffer?” Loss of public trust in physicians is a steep price to pay for the very small number of people who choose to take advantage of medical-aid-in-dying.
What it comes down to is we need the public to trust that their physicians are on their side and are advocating for the value of their continued life, instead of being on the side of their death because they are perceived to be a burden.
Understanding Patients’ Motives for Wanting Assistance in Their Death
How should physicians respond to a request from patients seeking assisted death?
The first thing to do is to understand that the request is an expression of despair. The second thing to do is to inquire more deeply about what brought the patient to that place of desperation, because there is a differential diagnosis for that request. The request may be about a settled rational conviction about not wanting to be here anymore. But nine times out of ten, the request is about something else. For example, anger at God for giving the patient cancer, for untreated depression, for an earlier trauma that is causing post-traumatic stress disorder, or for the illness itself, which may be causing pain and other symptoms. Or the patient may feel the illness is causing a huge burden on the family and there is no way to relieve it.
Don’t we want to address those issues as opposed to writing a lethal prescription to end the patient’s life? So, what does it take to do that kind of careful inquiry and evaluation to find and ameliorate the sources of the patient’s despair? It takes a lot of training, which, currently, physicians are not receiving. And both the training and the conversation with the despairing patient takes time, which no one has, because there are 30 people in many office waiting rooms. That is the reality of clinical practice today.
It is very dangerous to legalize physician-assisted death under these highly time- and money-pressured circumstances. When writing a prescription for secobarbital is the fastest and least expensive way to respond to suffering—and it is legal to do so—it will quickly become a go-to solution. The people advocating for legalizing physician-assisted death like to pretend this isn’t the reality, but it is.
We need all clinicians to up their skills and their knowledge about communication and symptom management, because providing that care is everybody’s responsibility.— Diane E. Meier, MD, FACP, FAAHPM
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Providing High-Quality Palliative Care Is Everybody’s Job
For many patients, their greatest concern at the end of life is not pain, but their level of debility and dependence on medical care and family members. How can palliative medicine provide this kind of emotional relief for patients dying of cancer?
Palliative care teams spend a lot of time in conversation with patients and their families about these issues. Every person living with a serious illness has intermittent moments of just wanting the suffering to be over. But it is dangerous to think such a passing moment is a settled, rational, long-term conviction. Palliative care teams are trained to sit with that level of despair and suffering and focus their attention on the person expressing those concerns; the team then can explore the roots of that despair with the patient, which can give the patient perspective and the ability to carry on.
But again, it takes training and skill to conduct these conversations. It also takes time and adequate staffing of palliative care teams. So, a major policy priority from my standpoint is getting to the place where cancer centers, hospitals, health-care systems, and community organizations are required to deliver palliative care services that meet certain staffing guidelines to provide quality care. Currently, there are no such requirements, and there is huge variation in staffing and quality across the country.
It is not physicians’ fault that they did not receive palliative care training or communication skills training during medical school residency and fellowship. However, it is all our responsibility to become better communicators and to become better at identifying and treating common causes of patients’ emotional and physical suffering. There will never be enough palliative care specialists to meet all our patients’ needs. It must be everybody’s job to provide patients with relief from the symptoms and stress of serious illness.
There are many ways to obtain high-quality online continuing medical education and maintenance of certification training in palliative medicine. One example is the Center to Advance Palliative Care (www.capc.org), where physicians can receive training and tools to better communicate prognosis, learn how to run a family meeting, and talk with patients to help them achieve what is most important to them in the changing context of their illness. For example, for someone with late-stage cancer who is still well enough to travel, it may be more important to take the whole family on a long-awaited cruise than to be enrolled in a trial for a fourth- or fifth-line treatment. If we clinicians ask, we can learn what matters most to patients and make recommendations to help them achieve these goals.
We need specialty-level palliative care for the most complicated or the most challenging situations. And we need all clinicians to up their skills and their knowledge about communication and symptom management, because providing that care is everybody’s responsibility.
DISCLOSURE: Dr. Meier reported no conflicts of interest.
REFERENCES
1. Ferrell BR, Temel JS, Temin S, et al: Integration of palliative care into standard oncology care: American Society of Clinical Oncology Clinical Practice Guideline Update. J Clin Oncol 35:96-112, 2017.
2. Mullins MA, Ruterbusch JJ, Clarke P, et al: Trends and racial disparities in aggressive end-of-life care for a national sample of women with ovarian cancer. Cancer 127:2229-2237, 2021.
3. Meier DE: The treatment of patients with unbearable suffering: The slippery slope is real. JAMA Intern Med 181:160-161, 2021.
4. Death With Dignity: How Death With Dignity Laws Work. Available at https://deathwithdignity.org/learn/access/. Accessed August 23, 2021.
