The Growing Need for Collective Palliative Care
The survival of our species may be at stake.
Posted January 10, 2022 | Reviewed by Davia Sills
- Climate change is threatening our survival as a species. Can we talk about it?
- The next 10 years are critical in making good decisions and taking positive action to protect the Earth.
- Learning how to have palliative care conversations can help us support patients and professionals grappling with this uncertainty.
A few weeks ago, I read the latest UN report on climate change. I was shaken to the core. The report makes it unequivocally clear that human activity has warmed the atmosphere, the ocean, and the land much more quickly than even the worst-case scenarios predicted in the past and that this warming will continue until the middle of the century, no matter what we do.
It's where we go from here that shocked me even more. If we do absolutely nothing, the consequences of this will be completely catastrophic and make it unlikely for human and other mammal life to be sustainable.
The report concluded that the next 10 years are absolutely pivotal.
The scientists who put this together are not able to definitively say that catastrophe is going to happen or that it is going to be avoided. They are saying that we could avert global catastrophe if we all cooperate, something for which we have very little historical precedent.
The most difficult conversation
I am faced with this same kind of problem frequently with patients who are very ill. In any kind of potentially life-threatening illness, we rarely get to the point where we could say, "You are definitely going to die." But we also get past the point of saying, "You are definitely going to be OK." We need to open two parallel conversations and have them active at the same time.
I worked with a family over many years: a couple in their early 30s with two young children, aged 4 and 6. Everything was beautiful; they were leading a very active life together. I was the pediatrician to both of these children, and so I met regularly with the whole family.
Then the young mother developed a small lump in her breast. It was removed through surgery, followed by radiation. Everything went well, and life was back to normal.
But lo and behold, after a few months, she started to experience pain, and she felt listless and tired. Cancer had metastasized to her bones. Once again, "No problem," the doctors said to her, "We'll do chemotherapy." But it didn't work. She and her husband traveled all over Europe, trying every kind of cutting-edge alternative treatment they could find, but nothing worked.
There came a day when it became necessary to have an extremely difficult conversation with her and her family because the possibility had emerged that this might no longer be about how to heal her condition and get back to normal. She spoke to me because she was concerned about the impact of her illness on her children.
"How do you feel today?" I asked her. "How do you see your current situation with your breast cancer and your illness? Where do you see yourself and the progress made in this process?"
She deliberated. "I feel struck by the findings from the radiologist. I don't really know what it means, but it frightens me."
"How do you feel in your body?" I asked her.
"A lot of pain all over. I was hoping that the chemo was going to reduce this by now."
"How confident do you feel that the cancer will disappear?"
"Well, I know the chances are not great when it's spreading to this degree."
"I can understand that this must be overwhelming..." I said.
Just with those words, she broke down and began to sob uncontrollably.
"I want you to know that we are all committed to going through this with you," I said softly. "I am sure that this applies just as much to the team at the hospital. Please know that this doesn't mean that you're going to die of this disease for sure. It just means that there is uncertainty, and we need to learn how to deal with that."
In fact, after a few months, she did die. Her husband and two young children had to pass through that pain and make adjustments to carry on with their lives without her. I still see the children as my patients.
A mental health crisis
For the last 18 months, we have witnessed a massive event in health care called a "pandemic." More than five million people have died worldwide from the disease, with a staggering 246 million reported cases. A recent study reports that almost 25 percent of people who do not die develop symptoms of "long COVID," which means that they have lung damage and do not properly recover their health.
But there has been another consequence of the pandemic, which has received less attention: a huge global mental health crisis, such that doctors, psychiatrists, psychologists, and psychotherapists are flooded like never before. It is frequently difficult for new patients to get an appointment.
According to a recent report in The Lancet, the pandemic has caused an estimated 53 million new cases of major depressive disorder and 75 million new cases of anxiety.
What is there about the last 18 months that has led to this kind of additional crisis? There are many reasons for depression and anxiety: It could be loneliness, reduced sexual activity, or worry about finances. Many people have spent much more time alone, left to be with themselves, to reflect and think.
I have discovered, from my own experience as well as talking to colleagues in the mental health world, that when we sit down and talk to patients about what is really going on, many people are sobering up and facing what is happening on the planet. This means that, just like my patient with terminal cancer, more and more people are realizing that we need to open ourselves to a new, and extremely difficult, parallel conversation.
We may be needing collective palliative care.
Many intelligent articulate commentators are raising this possibility. Alan Weisman's 2007 book, The World Without Us, for example, has seen a resurgence of popularity during the pandemic. It explores the duration of the human footprint on our blue planet once none of us are left. The UN climate report emphasized that this is not a done deal, however. We absolutely could rally together and create a sustainable future for our children and grandchildren. And we absolutely could, just by doing nothing, ensure a catastrophe of such magnitude that leaves very little grounds for optimism.
Collectively, we are not yet fully in a palliative care conversation. We are looking at a critically ill patient—humanity—who now needs intensive care and may or may not make it.
As a doctor, or a psychiatrist, or a psychotherapist, how do you have this conversation with your patients? Traditionally, it was a philosopher, or a shaman, or a spiritual leader who would help people with these big questions. These days, as many people are faced with global uncertainty about our collective future, they look to health care providers for support with the massive anxiety these questions generate.
I don't have the answer to how to deal with these situations, but I'd love to hear your thoughts.
Weisman, Alan (2007). The World Without Us. New York, NY: St. Martin's Press.