A Challenging Lesson: How To Care For The Dying

MAUREEN CAVANAUGH: This is KPBS Midday Edition, I am Maureen Cavanaugh. Everyone knows that a baby needs help entering the world. But what about leaving the world? Palliative care expert Judith Redwing Keyssar believes people are essential in helping others take the final journey of their lives. She has written about the people she has attended in their final days in her book, Last Acts of Kindness. Recently I spoke with her, tomorrow she will be conducting a workshop on palliative care in Encinitas, and here is that interview: [AUDIO FILE PLAYING] MAUREEN CAVANAUGH: Redwing, what have you found that dying people need in their last days and hours? JUDITH REDWING KEYSSAR: Honestly, I find that what dying people need most importantly is a peaceful and loving environment in which to die. Four different people, that is a different thing. For some, it means dying at home. For some, they feel safer dying in a hospital. Some need to be in a facility where they have round-the-clock help I think in general, if you ask people what they want, it is really about the calm and peaceful place, having affairs in order, and being surrounded by people they love. MAUREEN CAVANAUGH: We all know dying is a part of life, but do you think react that way? JUDITH REDWING KEYSSAR: I absolutely do not think react that way. I think particularly in our Western culture, we very much try to deny that dying is part of life. Honestly, I think all of our consumerism, this idea that we can protect ourselves some way by having more stuff, and the fact we live in a society where everything you look at now is about antiaging, well, if you follow that line of thinking, antiaging means anti-dying. If you do not have to get older, maybe you do not have to die. We live in a youth oriented culture, that does not appreciate honor, respect, aging, the aging body, and the wisdom that comes with aging. We do not talk freely or comfortably at all, about the fact that we all are born and live and are going to die, and we do not talk about preparation for the end-of-life. It is a very challenging dilemma in our culture. There are other cultures in the world where people actually do meditations and contemplation of end-of-life. When Plato was asked the most important thing to do in life, he said practice dying. It is something we do not do in our culture. MAUREEN CAVANAUGH: What brought you to this location in palliative care? I read that it might have begun for you when a friend of yours died in an accident, is that right? JUDITH REDWING KEYSSAR: Absolutely. In my book, I talk about how when I was in my early 30s and a close friend of mine was thirty years old, she was in a motor accident and spent three weeks in hospital here in California. Every day of that three weeks I would go into the intensive care unit and spent time with her. It really became clear to me that the work I was to do in this life on earth was about being what I called a midwife to the dying, being present at the bedside of people who are dying. Now it has expanded to people who are seriously ill as well. Very much with a sense that just as spirits being born into the world need a midwife, someone to literally hold them and read them through that threshold, people also need a lives on the other end, for the person who is dying and to help hold space for the loved one surrounding that person. It was very profound as a shift in my life to understand that. I of course have realized that in order to be at the bedside of the dying, I needed to go into the health profession, and I avoided that after being a medical school dropout in my younger years. I realized being a nurse was going to be the most important way for me to be at the bedside. MAUREEN CAVANAUGH: Is palliative care different from hospice care? JUDITH REDWING KEYSSAR: Absolutely. Many people in our culture do not understand, and I have to say, palliative care and hospice are very different. That said, palliative care is both philosophy of care as well as modality of care. The philosophy of palliative care which is about easing suffering at every level, medically, spiritually, emotionally and psychologically, it is certainly part of what hospice does. It is a big part of what hospice does. But hospice in our country is very much based on Medicare rules and regulations that say that if you are likely in the last six months of your life, you can avail yourself of hospice benefits, and they become your medical team. It is a time limited benefit, that does provide all kinds of care. It is also still at this point, focused on people who have let go of doing any curative treatments for disease. That may change in the coming years in terms of law, but at this point, that is still the case. Palliative care, on the other hand, is the broad holistic view of healthcare. It is looking at a person not just as a disease, but as who they are in the world, and what is their support system, and how they are dealing with things emotionally and spiritually, providing really that extra added layer of support to medical care. It is provided by interdisciplinary teams, chaplains, and volunteers. Palliative care can be implemented at any time during the disease process. It does not have to be the last six months. Anyone with serious chronic illness or end-stage illness I believe really benefits from access to palliative care professionals. There certainly have been studies done around the country last year, saying that people who get palliative care along with whatever treatment they are doing have better outcomes, and also live longer. MAUREEN CAVANAUGH: In your book Last Acts of Kindness, you tell a number of stories of how different people experience the end-of-life. Can you share one of the stories with us? JUDITH REDWING KEYSSAR: I would love to. There are so many, it is always hard to pick the most important story to tell, or one of the best to tell. I think actually I will tell you the story about a man who came into the intensive care unit that I was running in a small hospital, it was a rural environment. This man was well loved and a massive heart attack, and came into the intensive care unit. He was on all life support in Western medicine, ventilators, IVs to keep his heart going. It seemed to all of the doctors that it was unlikely he was going to live long. But his son, his closest relative, he lived a couple of hours away. So, of course, all of the phone calls were made. The son's wife came to visit, and really looked at us and said listen, my dad did have an advanced directive. We were his agent, and he was very clear he did not want to live on this kind of life support. So, now that we are here, what do we do? We talked about the process of taking someone off of the ventilator. They said very clearly, they needed at least twenty-four hours to sit with it. We took the patient off some of the medication so that maybe he could to make it a little with his son, she seemed able to do. His son asked him if he wanted to be on these machines and he shook his head vigorously, no, no, I don't. Take this tube out of my throat. We were to take him off of the ventilator to his own wishes. As we're about to do it, the next morning, the son's wife said he was not a religious man, but he had a Jewish upbringing. He would want to have his prayer shawl around him while he is dying, do we have time to do that? Of course, this is a small community, we sit of course, run home and get it. As she was running out, she said can I get a bottle of champagne as well? Because he would really would have wanted a champagne toast as he was going to die. MAUREEN CAVANAUGH: As you say, all of these stories are so different. This is a story about someone who does not want to extend their life, you have stories in there of people who are surprised that they are actually dying. One of the points you made in your book is the importance of planning for your death. This gentleman had an advanced directive. What kind of planning should people do, and why does it make such a difference? JUDITH REDWING KEYSSAR: Anyone over eighteen needs to have an advanced directive for healthcare come a sometimes often known as a durable power of attorney for healthcare sometimes people know it as a living will. Part of what is confusing, there are many forms that mean the same thing. In this day and age, advanced directives and durable power of attorney is more useful than a living will, because they need someone or two people to speak for you when you cannot speak for yourself. Whether it is because of serious illness or sudden accidents. What is most important about having this paperwork together is that it makes you consider what what I want? If I met the end-of-life, what if I have a dramatic accident, what is important to me? How do I want to be treated, and what does life support mean to me? Does it mean being on machines, or does it mean being surrounded by people I love? Where are the lines between? The other critical thing about advanced care planning is having conversations with people who are going to be your agents, and with your family and friends. It is so important to talk about what you might anticipate happening, or the ideal of what you might want to happen at the end of your life. If you don't write it down, and you don't talk about it, then we do not know how to treat you if something happens. There have certainly been public cases, situations we have seen on TV and in the news, where people ended up on very long term life-support and ventilators, and unable to communicate or have quality-of-life. They became legal cases, because somebody felt it was not okay to take them off of life support. In most of those cases, lawyers ended up saying if they had their wishes in writing, those long-term and legal battles would have been prevented. MAUREEN CAVANAUGH: The workshop you are going to be coming to Encinitas to give is called Last Acts of Kindness, Lessons for the Living. My final question to you, what did the living need to learn? What do we need to learn to help people we love leave the world? JUDITH REDWING KEYSSAR: I think what people need to learn is to get more comfortable with this territory of death and dying. And looking at how you access palliative care earlier in life, and how we, either as healthcare professionals or as loved ones, how we show up. I think a big part of it is our own self-examination of belief, feeling, and fear about death and dying. What have we been taught, as we were growing up about death and dying? How do we access our feelings about this? If we are not clear about how we feel about it in ourselves, how do we show up for someone else who is closer to the exit than we are? A big part of it is self-exploration. The other part is, we do not grow up in school taking classes and learning the depths of how our bodies work and what happens when our body start to fail. We certainly do not know what it looks like when people are dying. I have seen so many family members who have said to me how would I have known what to do or what to expect? Learning what to expect in a general way about the dying process is an important thing. One of the ways to do that, other than reading about it or taking a workshop is also to show up for people in your life who are seriously ill, or who are on hospice or are dying, because being present and showing up for people is also a way for us to learn not to be afraid. MAUREEN CAVANAUGH: Thank you so much for speaking with us, I really appreciate it. JUDITH REDWING KEYSSAR: You are very welcome, thank you.