In 2000, Higginson and Sen-Gupta published a review showing that between half and all of respondents to various surveys said that they would prefer to die at home. This makes intuitive sense. “Home” is comfortable and familiar, unlike an ICU bed. And that’s the real lesson: while the specific location of death is interesting, the underlying reason behind the location (or desired location) is more important. People want to feel loved and cared for as they come to the end. Therefore, regardless of location, we need to provide patients and caregivers the resources and support to make that possible. Sometimes those resources are medical in nature, sometimes they’re much simpler – just being with the person at the end of her life, ensuring that she has a roof over her head, loved ones at her side. All effort should be made to allow the completion of life to be as natural as possible. Because, of course, death is natural.
“There’s something normal about everything coming and going, everything having a beginning and ending,” says Michael Fratkin, MD, Founder of palliative care company ResolutionCare.
Fratkin’s goal is to help people understand and experience the naturalness of death and to complete their lives well.
“Everyone has the opportunity to heal up until the very last moments of their life and to come to terms with their life and to feel reconciled and to let go of some of the trauma and pain that they have. And that’s what inspires and motivates us, is to make sure that they’re comfortable […] work from the bottom of Maslow’s Hierarchy all the way up and take it as far as it’s meant to be for each of the individuals that we serve.”
Fratkin, as noted above, is a physician. He knows modern medicine well and practices it. Hearing him talk, though, it is immediately clear that he views modern medicine and technology as a means to an end. In conversation, the language he uses focuses more on psychological and emotional needs than on physical. Stepping back, though, it becomes clear that Fratkin’s approach is “holistic” in the literal sense of the word – viewing people as complete beings made up of a physical body and the mind and “spirit” (whatever that means in your particular worldview). Therefore, modern healthcare shouldn’t over-medicalize care by spending so much time on the physical body that the rest of the person is neglected.
In fact, that’s not what people want, although it may be hard for them to express it. This is an idea explored at length by Atul Gawande in Being Mortal. Priorities shift as a person moves towards the end of her life. Fratkin makes a similar point. He says that as a physician he’s “pretty good” at making people comfortable. Once that’s taken care of…
“If you’ve managed their symptoms and acknowledged that what they have can’t be fixed, and [you’ve] grounded them and the treatment plan in the reality that they are moving towards the completion of their life, they start to migrate from an intense desire for a highly medical sense of their treatment to a need for highly human or deeply human care.”
Serving both the physical and emotional is the purpose of palliative care. Medline defines palliative care as “treatment of the discomfort, symptoms, and stress of serious illness. It provides relief from distressing symptoms including pain, shortness of breath, [etc.].” It’s important to note that palliative care is related to but distinct from hospice care. Medline again: “Hospice care, care at the end of life, always includes palliative care. But you may receive palliative care at any stage of an illness. The goal is to make you comfortable and improve your quality of life.” (Emphasis added). (Note: In general, ResolutionCare focuses on palliative care at the end of life.)
Science and the humanity come together at this point, where the goal is to offer comfort. And the results of this merger reveal the importance of Fratkin’s holistic approach. Research has demonstrated that outcomes and quality of life are objectively better when palliative care is brought into the equation.
“I see it every day. It’s measurable.” Fratkin cited work from Harvard
(we weren’t able to dig up the link)Update: here’s the study. “Both studies looked at people with the same cancer care and [in one group] they added palliative care. Not only did people’s quality of life go up, not only did they demonstrate and report a substantially improved satisfaction, but they indeed did live longer.”
The benefits didn’t stop with longer lives of better overall quality. Costs came down, as well.
“Relevant to the business model around palliative care, they also spent less money. They had less chemotherapy in the last few weeks of life, they had less need for acute care and the emergency room. They were in less crisis, less distress, and they had a supportive alternative to manage whatever challenges came their way.”
If adding this human element back to end-of-life care is so beneficial and, arguably obvious, why did we get away from it in the first place? Fratkin says it’s because, while humans have an enormous capacity for altruism, we also are evolutionarily hardwired for some level of self-centeredness. He uses the Industrial Revolution to explain:
“The Industrial Revolution to me reflects the sort of global obsession we have with the products of our own hands. We’ve bedazzled ourselves with technology and we’ve focused our attention on what we could do by building machines more and more efficiently and more and more spectacularly to do more and more amazing things.”
Which is great, but it can only go so far.
“It doesn’t change the fact that we’re born, we live our lives and we die. And so we’ve taken, the ‘technologization’ of medicine about as far as we can. I mean, we’ll continue to refine our gizmos and our conceptual framework for bringing value to people with medicines, surgical procedures, or new and different things. But […] the mortality rate will remain a hundred percent.”
So what then is the role of technology in all of this? We have “amazing things” so what do we do with them? Use them to build communities and support each other, says Fratkin. Again, an example; this one the interview in which he was answering these questions:
“You’re sitting 3000 miles away comfortably in your environment and I’m sitting three times zones away and we’re connecting to each other. You’re asking me questions because you care about the answers, and you’re listening carefully to what my perspective is and then you’re gathering that perspective into some meaningful structure to share it with others. So it’s a powerful use of technology and I don’t have a clue how it works and I honestly don’t care. And as it applies to building systems of healthcare delivery, I have the same perspective. I don’t care how it works. I want it to get out of the way effectively so that people can connect with people.”
Without these connections, people suffer. With them, care teams can be more effective, loved ones can provide support. Fratkin used the story of a patient who hadn’t interacted with his family in almost a decade thanks to a devastating opioid addiction. And then he found a lump in his throat. He came in off the street and began treatment for his cancer, but he still didn’t have a support network around him. The ResolutionCare team helped him reconnect with his family through video conferencing. Two sisters, and aunt and the patient began “reacquaint[ing] themselves with each other after something like eight years of absence.” Then one of his sisters flew out to be with him in person during his treatment, and he’s now working back to going home, getting his own apartment, and staying sober. ( (This was an example of palliative care being used in the context of a “curable” individual, not one at the end of life.)
It wasn’t complicated – adding a few Skype calls to a regimen of chemotherapy. But it was enough to add significant quality to the man’s life, perhaps (if we are allowed to speculate) giving him the extra push he needed on his road to recovery.
Fratkin is clear that what ResolutionCare does isn’t magic. It’s a lot of work, but not overly complex.
“Don’t tell anybody, but the work that we’re doing […] it’s really pretty simple. We show up.”