Guest blogger Dr. Steve Pantilat is a long-time friend of Cambia Health Foundation and serves as chair of the Foundation’s National Advisory Committee for the Sojourns Scholar Leadership Program, which seeks to advance capacity, leadership, and innovation in the field of palliative care. He serves as Professor of Clinical Medicine in the Department of Medicine at UCSF, is the Founding Director of the UCSF Palliative Care Program and Director of the UCSF Leadership Center, which trains teams from hospitals across the country on how to establish palliative care services. He recently authored a book titled “Life after the Diagnosis: Expert Advice on Living Well with Serious Illness for Patients and Caregivers” which is available on Amazon.
In this blog post, Dr. Pantilat discusses why he decided to write the book, thoughts on palliative care, and how to talk with patients who have serious medical issues. You can also listen to Dr. Pantilat on his podcast that appeared on the Cambia Health HealthChangers podcast.
Why did you write "Life after the Diagnosis: Expert Advice for Living Well with Serious Illness for Patients and Caregivers"?
As a palliative care physician I often get calls and emails from friends, family and colleagues who are facing serious illness or who have a loved one with serious illness. They have questions about what the doctor means or how to decide about treatments. Serious illness can be confusing and frightening and you can't just google your way through. I share with them advice based on my 27 years of experience caring for thousands of seriously ill people. Every person asks if there's a book they can read to provide the same kind of guidance and I had to say "no." Until now. That's why I wrote my book. I realized that there's a great need for a book to guide people with serious illness and their loved ones. A book that offers clear, concise, caring and compassionate information about the experience of serious illness and how to get the best care from the medical system. A book that focuses on the whole person, explains what doctors mean, provides the truth behind the myths about serious illness, and offers practical recommendations on what to do and when. I can't be with every person going through serious illness, so I wrote a book to serve as that personal guide.
What is the most commonly misunderstood notion about palliative care?
The most commonly misunderstood notions about palliative care are that it is about dying and that you have to choose between quantity and quality of life. Palliative care is medical care focused on improving quality of life for people with serious illness. Serious illness like cancer, heart failure, emphysema, Parkinson’s disease, stroke, and dementia. The goal is to focus on the whole person to help people have the best possible quality of life for as long as possible. The research is clear that people who get palliative care have less pain and shortness of breath, better mood, better quality of life, and live just as long (there’s even studies that show that people with cancer who get palliative care live longer!). Abraham Lincoln said, “It’s not the years in your life, but the life in your years that matter.” That’s true and it’s also true that with palliative care you can have both.
Why is the end of life so difficult to talk about?
Thinking about the end of life is difficult because death is sad and filled with grief and loss and life is wonderful. In my experience, people with serious illness want to focus on living well, not on dying. If we can help people live as well as possible with serious illness and make treatment choices consistent with their hopes, values and goals, then there’s a good chance that this approach will follow through to the end of life. As the end of life approaches, we need to keep talking about hopes and goals, including for a peaceful death. We will only receive the care we desire by talking about it.
How can healthcare professionals better serve their patients during a serious illness?
The shock that follows a bad diagnosis is never easy for patients or their loved ones and caregivers. In the second chapter of Life after the Diagnosis, I provide practical fundamentals for developing a moving forward plan. I cover how to interview doctors, the internet, integrative/holistic medicine, palliative care, communication, what to the tell kids after a serious diagnosis, and more. We need to walk with our patients as they deal with serious illness and be there for them. We need to remember that they come to us for our medical expertise but also for our humanity, empathy, compassion and understanding. Offering ourselves to our patients will help them deal with the challenges of serious illness, and in the way that goodness spreads, will help us as healthcare professionals connect to our own humanism and find greater meaning in our work. Understanding how to offer and communicate about these difficult issues in a compassionate and clear way makes all the difference.
In this blog post, Dr. Pantilat discusses why he decided to write the book, thoughts on palliative care, and how to talk with patients who have serious medical issues. You can also listen to Dr. Pantilat on his podcast that appeared on the Cambia Health HealthChangers podcast.
Why did you write "Life after the Diagnosis: Expert Advice for Living Well with Serious Illness for Patients and Caregivers"?
As a palliative care physician I often get calls and emails from friends, family and colleagues who are facing serious illness or who have a loved one with serious illness. They have questions about what the doctor means or how to decide about treatments. Serious illness can be confusing and frightening and you can't just google your way through. I share with them advice based on my 27 years of experience caring for thousands of seriously ill people. Every person asks if there's a book they can read to provide the same kind of guidance and I had to say "no." Until now. That's why I wrote my book. I realized that there's a great need for a book to guide people with serious illness and their loved ones. A book that offers clear, concise, caring and compassionate information about the experience of serious illness and how to get the best care from the medical system. A book that focuses on the whole person, explains what doctors mean, provides the truth behind the myths about serious illness, and offers practical recommendations on what to do and when. I can't be with every person going through serious illness, so I wrote a book to serve as that personal guide.
What is the most commonly misunderstood notion about palliative care?
The most commonly misunderstood notions about palliative care are that it is about dying and that you have to choose between quantity and quality of life. Palliative care is medical care focused on improving quality of life for people with serious illness. Serious illness like cancer, heart failure, emphysema, Parkinson’s disease, stroke, and dementia. The goal is to focus on the whole person to help people have the best possible quality of life for as long as possible. The research is clear that people who get palliative care have less pain and shortness of breath, better mood, better quality of life, and live just as long (there’s even studies that show that people with cancer who get palliative care live longer!). Abraham Lincoln said, “It’s not the years in your life, but the life in your years that matter.” That’s true and it’s also true that with palliative care you can have both.
Why is the end of life so difficult to talk about?
Thinking about the end of life is difficult because death is sad and filled with grief and loss and life is wonderful. In my experience, people with serious illness want to focus on living well, not on dying. If we can help people live as well as possible with serious illness and make treatment choices consistent with their hopes, values and goals, then there’s a good chance that this approach will follow through to the end of life. As the end of life approaches, we need to keep talking about hopes and goals, including for a peaceful death. We will only receive the care we desire by talking about it.
How can healthcare professionals better serve their patients during a serious illness?
The shock that follows a bad diagnosis is never easy for patients or their loved ones and caregivers. In the second chapter of Life after the Diagnosis, I provide practical fundamentals for developing a moving forward plan. I cover how to interview doctors, the internet, integrative/holistic medicine, palliative care, communication, what to the tell kids after a serious diagnosis, and more. We need to walk with our patients as they deal with serious illness and be there for them. We need to remember that they come to us for our medical expertise but also for our humanity, empathy, compassion and understanding. Offering ourselves to our patients will help them deal with the challenges of serious illness, and in the way that goodness spreads, will help us as healthcare professionals connect to our own humanism and find greater meaning in our work. Understanding how to offer and communicate about these difficult issues in a compassionate and clear way makes all the difference.