Serious illness and suffering. Fear and new awareness of death. The uncertainty they all bring about and what would constitute humane and effective medical treatment for each. These physical and emotional concerns, central to palliative care, have forced their way into so many of our lives during the pandemic, even as we approach a distorted version of normal. They are also the concerns that Dr. Diane E. Meier has worked for decades and thinks about it deeply. Meier, 68, is the longtime director of the Center to Advance Palliative Care, part of Mount Sinai Hospital in New York City, and received a 2008 MacArthur Foundation “Genie” grant. She was a uniquely skilled observer of the Covid-induced cataclysms – often existential – that patients and doctors experienced. "If we ever needed to be reminded of the importance of human connection and support for people with serious illness," says Meier, "this pandemic made the point very, very clear."
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In September you were quoted The Washington Post said that during the pandemic, other doctors sought palliative care practitioners to "be the human side of medicine." What does this mean for the shortcomings of the medical system? That the public's experience of the medical profession has been summed up in the market where everyone working in the system is putting tremendous pressure to see multiple patients in the shortest possible time and to ensure that the services we provide are well reimbursed. Because of this, the pandemic was a severe blow to the economies of many health systems: the main sources of income related to elective surgery and other procedures were closed because the health systems had to be re-used for masses of people with Covid. The pandemic is the example of why this is such a fragile foundation for the health system of a large First World country. Drivers are about doing what it takes to get paid as opposed to what we thought was our job serving people who are suffering. It's not that my colleagues don't care or realize that their relationship with patients is an effective tool of healing. My point is not that my colleagues don't want to be disturbed. You can't worry about it. They are therefore relieved to have palliative colleagues who take the time they need for the needs of their patients and the patients' family members. This enables our colleagues to overcome the moral distress and internal ethical conflict that the business side of medicine creates.
Do patients feel differently about palliative care when the need for it is caused by something unknown like Covid-19 as opposed to a cancer diagnosis, for example? The fear and fear is completely different. It's not that diagnosing dementia, cancer, or kidney failure isn't scary. It is, but it is somewhat normalized. You know people who it happened to. During the Covid pandemic – there have been so many interesting accounts of the 500,000th death about how invisible all the grief is and how the whole country is in a state of numbness and denial from being too much to absorb. It is producing too much. Let's say that was your attitude: it won't happen to me. Then do it. All of this rejection is falling apart. All this numbness won't protect you. It's terrifying and is compounded by the fact that family members cannot be with patients. One of the greatest sources of suffering is patient isolation and the fact that the people who love them best cannot be with them. I'm going to tell you, iPads and iPhones don't replace iPads.
Has the pandemic affected our collective attitudes towards grief? There are many shadow pandemics. One is the trauma to the entire healthcare profession this past year. The other trauma is the roughly 10 people for every person who died from Covid and is in mourning. That's over five million people. This is a shadow pandemic that will be with us long after the virus is controlled. Our current President has worked hard to address this through the ritual ceremonies to remember and honor the dead and has talked a lot about his own losses to normalize that he talks about losses every day and how they are with you. This is important. We need other people to do that too.
This is a little distraction: in December you published a piece in JAMA Internal Medicine on the "slippery slope" of improved access to physician-assisted death. But I'm still not entirely sure why there would be big concerns about people asking for excessive medical help to end their lives when people, by and large, don't want to die. Countries that have facilitated euthanasia or assisted suicide have argued that it must be entirely voluntary, not due to financial or family pressures, not due to untreated or unrecognized depression, and not due to untreated, poorly treated pain. They state this and yet there is no evidence that these are not the main factors driving this. Following these guidelines is incredibly expensive and time consuming and doesn't happen. This is the situation in the Netherlands, Belgium and Canada: the heartfelt adherence to restrictions announced when you get the public to vote for the first time goes up in smoke once the practice is validated . And it is always with the topics of conversation that it is about alleviating the suffering, that while the person cannot say so, that the person would agree that they will be better off when they are dead. Do I think people should have the right to control the time of their death? I do. I think it's a dangerous public policy. It is a dangerous way to go on claiming that respect for autonomy is at stake when the real drivers get rid of a painful and expensive burden on society.
But can't we always say that people who had access to better care would not consider this other option? What if, in reality, there is no access to better care? Let's say to suffering people: “There are ways to still find meaning in life. We just can't necessarily guarantee that you will be able to use them. " There's a real tension there. Our system is so broken. But do we solve this problem by offering them a doctor-assisted death? I don't want to be part of this society. There was a recent case in Canada: a man with neurodegenerative disorder who was cognitively intact. To get home from the hospital, he needed 24-hour care and the government wouldn't pay for 24-hour care. He recorded hospital staff who offered alternative medical assistance as he died. Do you think this is not putting any pressure on people who are already feeling stressed? They must be met with a resounding commitment to a continuing relationship. Not, "You're right. I agree that you'll be better off when you're dead. Here's a recipe." That pushes someone fighting their way straight over the cliff.
Could some proponents of physician-assisted death fail to understand that while palliative care cannot alleviate all of the pain, it cannot? can Still helping patients find quality of life? It is important to dissuade you from the idea that pain is why people seek medical help when they die. Pain is not the cause. It's existential and spiritual. The only treatment for this is relationship, attention, sitting with. I'm not trying to fix. This willingness to be with the person and move them to give voice to this suffering is such a powerful intervention. It takes training. It's a process. It's not about, "We can fix anything." But we can enable voice to be given to deep suffering, and that makes a world of difference.
Kevin Wolf / Associated Press for the Center to Advance Palliative Care
Should we consider suffering 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 always spoke of "total pain". It wasn't just pain or constipation or fatigue or depression or insomnia. They were questions of purpose, meaning, identity, relationships. While the practice of medicine is pretty good at treating things that cause tremendous suffering, the existential, spiritual, and relational foundations in the palliative care team are very often addressed. We see this as part of our work. In the rest of medicine, doctors don't do it and people have to find their way around. If they are not deeply embedded in a religious community or extended family, it causes tremendous suffering because meaning is created through relationship. The fear of death is about the loss of the relationship with the world and the people in it.
At the this phase of your career, Are there aspects of the human experience of chronic illness or pain that previously puzzled you and that you now understand? It has to do with trauma. Trauma is common. In wealthy families and poor families; individual and family trauma; Community trauma and social trauma. We have so much of it here – just start racism and move on. It is suppressed and treated with rejection. That won't make it go away. It controls how people react to new trauma, whether it's a diagnosis, a pandemic, or a January 6th. So my perspective on trauma is on a larger scale than it used to be – a species and tribal scale. And as I read the news, I don't know if we'll move on. The need to hate and kill the other is a defining human trait and informs so many aspects of our society. Nor do I see any separation between what has happened to medical practice and this reality, because what has happened to medicine is primarily driven by a social commitment to profit. And what is that? It's a trauma.
You could imagine someone rolling their eyes and saying, "You say capitalism is trauma?" What has happened to the practice of medicine is that the public perception is that it has become completely transactional. That we do things to either make money or to spend money. For example, many people of color fear that talking about whether or not they want cardiopulmonary resuscitation is not about what is best for that patient. It's about saving money for the hospital. These perceptions are not wrong. That's the problem. And there is more than one core of truth in the perception of people who feel like they or their loved ones are walking through a marketplace of M.R.I.s and P.E.T. Scans and specialists and sub-specialists, and everyone accounts. The visibility of the extraction mentality of medical practice – it's not subtle and the public knows it. I worry about the hard-earned trust our profession has worked towards for hundreds of years with the commercialization of health care being destroyed.
Can you work out the connection you suggested earlier between trauma and the death of the other? The analogy is post-traumatic stress disorder: an overreaction to new trauma because previous traumas were never addressed, never expressed, never worked through. So everything that happens triggers it again. There's a book called "The Body Holds The Score," and that's what it's all about: Things that happened to you years ago never go away. They are embedded in your mind and body, providing information on how you will react to things that are happening today. In my typical mechanistic doctor way, I'll tell you that there is something to be done: it's called trauma-informed care. It's literally as easy as asking people what happened to them. What happened in your childhood Because people know. You were just never asked. And until it is dug up and respected for the power it had in that person's life, it controls. The only way to regain control is to bring it into consciousness and name it.
Have you found that there are common positive meanings that people find in life when they are critically ill and that apply to those who don't? Yes. You may have read people who talk about how, while they wouldn't want anyone to have their diagnosis, they are grateful for it. Because they stop worrying about things that are not important and focus on the things that are important. This could be gardening or hanging out with grandchildren. Or my colleague – she is 60 – said she was going to be a bat mitzvah. She is not sick, but the pandemic has focused her on things she had postponed. And she realized: what am I waiting for? This reflection process requires a break in the race in circles, as our normal life normally is: get up at 6am, go to the gym, go to work, etc. Whether we are taking a break because the pandemic forced it on us or because we have a new one Having a diagnosis that requires us to reorganize our days – the hustle and bustle that has shaped most people's everyday lives stands in the way of reflection. However, it is a common phenomenon that people take the time to think about what is important. People are desperately trying to make room for their inner life.
For the sake of clarity, this interview has been edited and condensed from two conversations.