One of the more neglected topics in healthcare is palliative care. Palliative care is something that BJ Miller, a physician, hospice and palliative medicine doctor, is quite passionate about and believes that it is part of saving healthcare (Ted.com). In 2015, Dr. Miller did a Ted Talk, What Really Matters at the End of Life, where he drew listeners in with his graciousness and sensitivity as he talked about the experience of dying.
Miller has firsthand experience shaking hands with death. In his sophomore year of college, he and some of his friends were “horsing around” on a parked commuter train. He ended up bumping into the wires that run overhead, and an electrical current of 11,000 volts went through his arm and blew through his feet. He survived, but his life was dramatically changed. He spent several months in a burn unit and he lost half of his arm and the bottom half of both legs.
Even though BJ Miller’s Ted Talk was done about 5 years ago, his message still rings true today and is worth sharing. After reading this, we encourage you to take 20 minutes to hear his moving message firsthand. Before we jump into his wisdom though, let’s first define palliative care to make sure we are on the same page.
As defined by GetPalliativeCare.org, palliative care is, “specialized medical care for people living with a serious illness. This type of care is focused on providing relief from the symptoms and stress of the illness. The goal is to improve quality of life for both the patient and the family” (GetPalliativeCare.org). The site goes on to further state that palliative care focuses on patient needs, not their prognosis. BJ Miller describes it as, including but not limited to end of life care, about comfort and living well at any stage, and as a type of care that you don’t have to be dying anytime soon to benefit from. If you or a loved one suffers from a serious illness, like Alzheimer’s, Parkinson’s, ALS, or various other diseases, if you haven’t considered palliative care, then it just might be what you are looking for to make sure you or your loved one are experiencing the quality of life that is achievable with the kind of support these professionals provide.
GetPalliativeCare.org further informs that your team of palliative specialists will work with your other doctors, your family, and most importantly, you. They not only treat your symptoms and the stress that comes with them, but they also provide an additional layer of support. The site echoes Miller’s statement that palliative care is not something you only need to seek out once you are far along in an illness; you can seek it at any point. If you or a loved one has a serious illness, spend some time exploring the GetPalliativeCare.org site. It has many resources.
Now that we are all on the same page about palliative care, let’s come back to BJ Miller. As Miller states in his Ted Talk, “For most people, the scariest thing about death isn’t being dead, it’s dying, suffering” (Ted). Since suffering is the scariest part, Miller’s goal is to bring intentionality and creativity to the experience of dying. As he gently informs us, there is necessary and unnecessary suffering. Necessary suffering, like Miller having to overcome the loss of his limbs or the effects of an illness, unites caregiver and care receiver. They suffer together. It unites them. Yet, it is unnecessary suffering, suffering that stems from only seeking healthcare that focuses on diagnosis and “cures” that doesn’t alleviate symptoms, provide fulfillment, or change our mindset about circumstances, that we can change. We can affect how we die. By changing unnecessary suffering, it might just make dying less scary.
Dr. Miller shares an example of one of his patients, Frank, who is living with advancing prostate cancer and long-standing HIV. He assisted Frank in not having regrets in life. For example, he was able to raft down the Colorado River, even in the face of his health risks. “Our role as caregivers, as people who care, is to relieve suffering – not add to the pile,” says Miller (Ted). In Frank’s case, there was some relief in his suffering being able to take this last adventure fulfilling trip.
By lending patients the support to figure out what is best for themselves overtime, palliative care can help reduce unnecessary suffering. Through tending to the body, the senses, and the little things, or maybe not so little things like a rafting trip, steps can be taken to reduce unnecessary suffering in end of life care or in living with long-term diseases or disabilities. As Dr. Miller points out, tending to the body and senses can make dying less burdensome and make it less scary, while also improving quality of life, and bringing more dignity to the experience of dying. One example, at Zen Hospice where Dr. Miller has worked, they bake cookies in the kitchen to provide the comfort of the smell of home. This is one of the simpler yet most valuable ways that team at Zen Hospice tends to the senses.
Dr. Miller wants to reframe how we think about dying and palliative care. “Life and health and healthcare can become about making life more wonderful, rather than just less horrible.” Instead of dying being a burden to others, Dr. Miller posits, “aging and dying can become a process of crescendo through to the end.” That is the ultimate goal of palliative care—making life more wonderful.
This Ted Talk is not only an illumination into how palliative care can reduce suffering and enhance quality of life, but it also reminds us that as those who receive care or give care can make a difference and make a choice about suffering. Through palliative care, you can affect how you die.
At Family Estate Planning Law Group, we have experience in helping those who have long term illnesses and even those who don’t, plan for the future and end of life. We can help you make sure you have the documents, finances, and plan in place that will take some of the burden off of dying and receiving palliative and hospice care. Our Family Care MeetingTM creates a space where we can help you facilitate a discussion with your loved ones about your wishes, at the same time allowing them to develop a relationship with us and your other trusted advisors, so that when the time comes and your loved ones need to execute your plan, you and them have peace of mind knowing you all are on the same page.