Serious illness and suffering. Fear and fresh awareness of death. The uncertainty they all bring and what, for each, would constitute humane and effective medical treatment. Those physical and emotional concerns, central to palliative care, have forced their way into so many of our lives during the pandemic, even as we edge toward some skewed version of normalcy. They’re also the concerns that Dr. Diane E. Meier has been working on and thinking deeply about for decades. Meier, 68, is the longtime director of the Center to Advance Palliative Care, which is part of New York City’s Mount Sinai Hospital, and a 2008 recipient of a MacArthur Foundation “genius” fellowship. She has been a uniquely qualified observer of the Covid-induced cataclysms — often existential — experienced by patients and physicians. “If ever we needed to be reminded of how important human connection and support is for people with serious illness,” Meier says, “this pandemic has made the point very, very clearly.”
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In September, you were quoted in The Washington Post saying that during the pandemic, other physicians have been looking to palliative-care doctors “to be the human side of medicine.” What does that imply about the medical system’s deficiencies? That the public’s experience with the medical profession has been subsumed by the marketplace, where there is enormous pressure on everyone working in the system to see multiple patients in a very short period of time and ensure that the services we offer are well reimbursed. Which is why the pandemic was such a blow to the economy of many health care systems: The major sources of income, which had to do with elective surgical and other procedures, were shut down because of the need to repurpose health systems for masses of people with Covid. The pandemic is the exemplar of why that is such a fragile foundation for a major first-world country’s health care system. The drivers are about doing what is necessary to get paid as opposed to what we thought our profession was all about, which was serving human beings who are suffering. It’s not that my colleagues are uncaring or don’t realize that their relationship with patients is a powerful instrument of healing; my point is not that my colleagues don’t want to be bothered. They can’t bother. So they’re relieved to have palliative-care colleagues who will take the time that they know their patients and patients’ families need. That enables our colleagues to overcome the moral distress and ethical inner conflict that the business side of medicine creates.
Do patients feel differently about palliative care when the need for it is caused by something unfamiliar like Covid-19 as opposed to, say, a cancer diagnosis? The fear and anxiety is completely different. It’s not that getting a diagnosis of dementia or cancer or kidney failure is not frightening. It is, but it’s somewhat normalized. You know people it’s happened to. Whereas the Covid pandemic — there was so much interesting coverage marking the 500,000th death about how invisible all the grieving is and how the whole country is in a state of numbness and denial because it is all too much to take in. It is too much to process. Let’s say that’s been your mind-set: It’s not going to happen to me. Then it does. All that denial falls apart. All that numbness won’t protect you. It is frightening, and compounded by the fact that family members can’t be with patients. One of the largest sources of suffering is the isolation of the patient and that the people who love them best can’t be with them. I will tell you, iPads and iPhones do not substitute.
Has the pandemic affected our collective attitude toward grief? There are many shadow pandemics. One is the trauma to the entire health profession during this last year. The other trauma is the roughly 10 people for every person who has died from Covid who are grieving. That’s over five million people. That is a shadow pandemic that will be with us long after we get the virus under control. Our current president has worked hard to begin to address that through the ritual ceremonies to remember the dead and honor them, and he has talked a lot about his own losses, to normalize talking about losses and how they’re with you every day. That’s important. We need other people to do it too.
This is a bit of a sidetrack: In December, you published a piece in JAMA Internal Medicine about the “slippery slope” of increased access to physician-assisted death. But I’m still not quite clear why there would be a major concern about people unduly requesting medical assistance with ending their life when, by and large, people don’t want to die. Countries that have enabled euthanasia or assisted suicide have claimed that it has to be totally voluntary, cannot be due to financial or family pressures, cannot be due to untreated or unrecognized depression and cannot be due to untreated, poorly managed pain. They state that, and yet there is no evidence that those are not the major factors driving this. What it takes to adhere to those guidelines is incredibly expensive and time-consuming and doesn’t happen. That’s the situation in the Netherlands and Belgium and Canada: All the heartfelt adherence to restrictions that are announced when you first get the public to vote in favor of this go up in smoke once the practice is validated. And it’s always with the talking points that it’s about relief of suffering, that the person, even though he cannot say this, would agree that he would be better off dead. Ethically, do I think people should have the right to control the timing of their death? I do. I think it’s dangerous public policy. It’s a dangerous path to go down with the claim that it is all about respect for autonomy, when the real drivers are getting rid of a painful and expensive burden on society.
But couldn’t we always say that if people had access to better care then they wouldn’t consider this other option? What if the reality is that access to better care isn’t there? Are we saying to suffering people, “There are ways to still find meaning in life; we just can’t necessarily guarantee you’ll be able to take advantage of them”? There is a real tension there. Our system is so broken. But do we solve that problem by offering them physician-assisted death? I wouldn’t want to be part of that society. There was a recent case in Canada: a guy with neurodegenerative disorder who was cognitively intact. In order to go home from the hospital, he needed 24-hour care, and the government would not pay for 24-hour care. He recorded hospital staff offering him medical aid in dying as an alternative. You think that doesn’t create pressure on people who already feel like burdens? They need to be met with a resounding commitment to continued relationship. Not: “You’re right. I agree you’d be better off dead. Here’s a prescription.” That pushes someone who is struggling right over the cliff.
Might there be a lack of understanding on the part of some advocates of physician-assisted death that while palliative care maybe can’t relieve the entirety of one’s pain, it can still help patients find quality of life? It’s important to disabuse you of the notion that pain is the reason people request medical aid in dying. Pain is not the reason. It is existential and spiritual. The only treatment for that is relationship, attention, sitting with. Not trying to fix. That willingness to be with and engage the person in giving voice to that suffering is such a powerful intervention. It requires training. It’s a procedure. It isn’t about, “We can fix everything.” But we can enable giving voice to profound suffering, and that makes a huge difference.
Should we think of suffering as inevitable? That’s a great question, and the answer to any great question is “It depends.” It depends on the type of suffering. Dame Cicely Saunders used to talk about “total pain.” It was not just pain or constipation or fatigue or depression or difficulty sleeping. It was issues of purpose, meaning, identity, relationships. So while the practice of medicine is pretty good at the mechanics of treating things that cause tremendous suffering, the existential, spiritual and relationship fundamentals are addressed very often in the purview of palliative care teams. We see that as part of our job. In the rest of medicine, clinicians don’t, and people are left to find their way. If they’re not strongly embedded in a faith community or extended family, it causes tremendous suffering, because meaning comes through relationship. The fear of death is about the loss of relationship with the world and the people in it.
At this stage of your career, are there aspects of the human experience of chronic illness or pain that used to be mysterious to you that you now understand? It has to do with trauma. Trauma is widespread. In wealthy families and poor families; individual and family trauma; community trauma and societal trauma. We have so much of that here — just start with racism and go on. It is repressed and treated with denial. That doesn’t make it go away. It’s controlling how people respond to new trauma, whether it’s a diagnosis or a pandemic or a January 6th. So my perspective on trauma has a bigger scale than it used to — a species-level and tribal-level scale. And as I read the news, I don’t know whether we’re going to evolve our way out of this. The need to hate and kill the other is a determinative human characteristic and it informs so many aspects of our society. I also don’t see a disconnect between what has happened to the practice of medicine and that reality, because what’s happened to medicine is being driven by a societal commitment to profit above all else. And what is that? It’s trauma.
You could imagine somebody rolling their eyes at you, saying “You’re saying capitalism is trauma?” What has happened to the practice of medicine is that the public perception is that it has become totally transactional. That we do things either to make money or to avoid spending money. So, for example, many people of color fear that a conversation about whether or not they want cardiopulmonary resuscitation is not about what’s best for that patient; it’s about saving money for the hospital. Those perceptions are not wrong. That’s the problem. And there’s more than a kernel of truth in the perceptions of people feeling as if they or their loved one is being put through a marketplace of M.R.I.s and P.E.T. scans and specialists and subspecialists, and everybody is billing. The visibility of the extraction mind-set of the practice of medicine — it’s not subtle, and the public knows it. I’m worried about blowing the hard-earned trust that our profession worked toward over hundreds of years through, essentially, the commercialization of health care delivery.
Can you tease out the link you suggested earlier between trauma and killing the other? The analogy is post-traumatic stress disorder: an overreaction to new traumas because the prior traumas were never addressed, never expressed, never worked through. So everything that happens re-triggers it. There’s a book called “The Body Keeps the Score,” and that’s what it’s about: Things that happened to you years ago don’t ever go away. They are embedded in your mind and body and inform how you react to things that happen today. In my typical mechanistic doctor manner, I will tell you that there are things to do about it: It’s called trauma-informed care. It’s literally as simple as asking people what happened to them. What happened during your childhood? Because people know. They’ve just never been asked. And until it is unearthed and respected for the power that it had in that person’s life, it is controlling. The only way to take back control is to bring it to consciousness and name it.
Have you found that there are common positive meanings people find in life when they’re seriously ill that are applicable to those who aren’t? Yes. You may have read people talking about how while they would not wish their diagnosis on anyone, they are grateful for it. Because it made them stop worrying about things that aren’t important and focus on the things that are. That might be putting the garden in or spending time with grandchildren. Or my colleague — she’s 60 — said she’s going to become a bat mitzvah. She’s not sick, but the pandemic focused her on things she had put off. And she realized, What am I waiting for? That process of reflection requires pausing the racing in circles that our normal life tends to be: Get up at 6, go to the gym, go to work, etc. Whether we’re pausing because it has been forced on us by the pandemic or because we have a new diagnosis that requires us to reorganize our days — the busy-ness that has characterized everyday life for most people gets in the way of reflection. But it is a very common phenomenon for people to take the time and reflect about what’s important. People are trying desperately to make room for one’s inner life.
This interview has been edited and condensed for clarity from two conversations.