On January 1, 2011, the oldest members of the baby boom generation celebrated their 65th birthday and marked a societal trend that will challenge us individually and collectively as we grapple with how to care for an aging population that is expected to live longer than any generation prior. As these baby boomers age, the issues surrounding aging and dying are likely to gain prominence in our daily news. The debate of how to balance the alleviation of suffering while allowing individuals to retain their dignity in accordance with their personal preferences may well be one of the defining arguments of the coming decades. Ira Byock, M.D., director of palliative medicine at Dartmouth - Hitchcock Medical Center, discusses these issues and more in his book The Best Care Possible.
Why this book now?
Ira Byock: We live in unprecedented times. Unfortunately, despite all the advances in hospice and palliative care, there's a true crisis that surrounds the way we die in America today. Countervailing trends threaten to swamp any progress in caring for our population. We are an aging nation. There are now more people 65 years or older than 20 or younger, for the first time in our nation's history. But the silver tsunami is only one demographic trend. Thanks to the scientific advances of modern medicine, in the latter half of the 20th century we invented chronic illness.
People now survive for many months, and sometimes years and even decades, with diseases that used to kill people quite quickly. That's a good thing, but it is challenging our society in utterly unprecedented ways.
Because of advances in medicine, people live much longer with advanced illness and, as a result, people are now sicker before they die than ever before in human history. I have cared for many octogenarians living with heart failure, kidney failure, and dementia. That's not wrong; life is precious, after all. But in preventing people from dying of simple things, like pneumonia or kidney failure, we have made it harder to die today than at any point in human history. And while our healthcare system -- the medical-industrial-insurance complex -- is powerfully effective at treating disease, it often ignores the well-being of the people we're treating. For these reasons we need to look at what "the best care possible" is for people living with serious illness or advanced age in this contemporary, unprecedented world.
As a culture, we need to grow the rest of the way up and incorporate the fact of mortality into our concepts of full and healthy living. As savvy citizen-consumers, we must demand much better medical care through the end of life while avoiding the medicalization of what are fundamentally personal experiences for individuals, families, and communities.
How do you define the "best care possible"?
IB: As a physician I can only help define what "the best care possible" is for a patient when I know the person I am caring for. One of the most important lessons I've learned in my years of practice is that illness is only partly medical. While people who are seriously ill obviously have medical problems, the fundamental nature of illness is personal.
The best care involves applying state-of-the-art medical science in diagnosing and treating disease, while tailoring treatment to the values, preferences, and priorities of the person who is ill.
These days we use a process called "shared decision making" to define what the best plan of care is for a person at each point in time -- and then repeat the process, either as time passes or as the person's condition improves or progresses. Shared decision making accepts that the person who is ill, with his or her family, already is expert in his or her values, preferences, and priorities. We doctors are, hopefully, expert in the diagnosis and treatment of injuries and diseases. Together, doctors and patients (and, where appropriate, their families) can decide which treatments for a patient's condition are consistent with his or her values and achievable health outcomes. The resulting goal-directed plan is not just individualized; it's personalized.
Healthcare in the U.S. is a hot topic and receives much criticism, sometimes deserved. In its defense, what aspects of healthcare in the U.S. are done particularly well? Or perhaps better said, what isn't the problem?
IB: American healthcare is brilliant at diagnosing and treating disease. Say what you will about our nation's deficiencies in preventive health or lifestyle diseases of smoking, alcohol, and obesity; when it comes to treating acute illness or injury, no country does it better.
It's just that this very good thing is being delivered in ways that come with some gaps and unintended consequences. In fact, while we aspire to a patient-centered healthcare system, what we really have is a disease treatment system.
You describe the physician's role in end-of life care as being caught between a rock and a hard place. What are the rock and the hard place, and how would you describe the area in between?
IB: Physicians exist first and foremost to save lives. It is almost a shamanistic social role. People don't want to be dead, and they come to doctors to keep themselves from dying. We doctors love to save lives. I do! And science has given us hitherto unimaginable powers -- at times seemingly magical powers -- to repair injuries and fight disease. However, we have yet to make even one person immortal. As captains of our patients' healthcare teams -- and collectively as the rightful social and cultural leaders of matters related to health -- we doctors must extend our commitment to providing the best care possible through the end of life. The continuum of our noble role of helping people to live as long and as well as possible includes assisting people in dying well.
How would you define the concept of "dying well"?
IB: The word "well" in the phrase "dying well" is most often read as an adverb, modifying the process or experience of dying. And it is. But in the more culturally challenging and important reading of the phrase, "well" is an adjective, which describes the person who is dying. Can a person be well as he or she is dying? My answer is, resoundingly, "Yes!"
My experience is both professional -- as a doctor who has worked in emergency medicine and hospice and palliative care -- but also personal -- as a child whose parents and parents-in-law and many other people I love die. Many people I have known, despite the fact of their bodies failing, have expressed a sense of overall well-being -- or being right with the world -- during their last days.
Even today, with all of the tears in the fabric of our society and caring systems, we can care for people in better ways that can preserve the opportunity of many to die well.
This is not philosophy as much as anthropology. Caring for people in a way that enables them to die well begins quite simply with meeting their basic needs. People who are seriously ill commonly need help with the disabilities and indignities of illness -- getting dressed, getting cleaned, getting fed. Most people have families who can help care for them, but those families need teaching and backup to confidently provide care. People who are dying need good medical care to have their pain and other physical symptoms controlled -- stated differently, they need to be relatively comfortable. All that is socially doable for most people today.
What are the most common misconceptions about palliative care?
IB: Two common misconceptions about palliative care are worth addressing, because both inhibit people's access to services that they would want.
The first is that palliative care and hospice are synonymous. Hospice is one form of palliative care. In the United States, under Medicare and many insurance policies, hospice is limited to people who acknowledge that they are dying and are willing to forgo treatments for their disease. Hospice is often concentrated around care in people's homes.
In contrast, palliative care is the general discipline (of which hospice is a part) that is intended to treat pain and other symptoms, help in making difficult decisions, and improve life for people who are seriously ill and their families. In recent years there has been a rapid blossoming of palliative care programs in hospitals, cancer centers, and ICUs that provide care right along with active disease treatments. Medicare does not have a payment stream for (nonhospice) palliative care and therefore does not impose restrictions.
The second misconception is that palliative care is similar to -- or a euphemism for! -- euthanasia. Nothing could be further from the truth. It is a founding principle of palliative care that we do not hasten death. There's a distinction between alleviating suffering and eliminating the sufferer -- between enabling someone to die gently of their disease and ending that person's life with a lethal pill or injection.
You note that when it comes to the ongoing debate about physician-assisted suicide, you are firmly opposed to both sides of the argument. Where then do you stand on the issue?
IB: I have said that in the debate over legalizing physician-assisted suicide, both sides are wrong.
The proponents of legalization (aka Pros) are wrong because it would solve nothing. The day after legalization, physicians would be no better at treating pain, communicating honestly and sensitively, guiding people through the difficult but inevitable challenges of completing a life. They would simply now have authority to write lethal prescriptions. The day after, Medicare would still require people to give up treatment for disease in order to receive hospice care for their comfort and well-being and their families' support. Nursing homes would still be woefully understaffed. Patients would still be impoverished -- hundreds of thousands forced into bankruptcy -- by a medical-industrial-insurance complex that profits off of diagnoses and treatments while ignoring the personal needs of patients. Pros are wrong because people are inherently dignified! So says the preamble of the 1948 United Nations Universal Declaration of Human Rights. Our job in every community and certainly as medical, nursing, and healthcare professionals is to care for people in ways that allow them to feel wanted, worthy, and dignified through the very end of life.
The mainstream of groups opposed to legalizing physician-assisted suicide, including faith-based organizations, has been right on the ethics, but painfully wrong on the response. They have only told the public what is wrong, when the opportunity -- I would say responsibility -- was to show us all what much, much better care would look like. A very small number of demonstration projects have changed the conversation in the most constructive of ways by actually building enlightened long-term care communities and dementia care centers that provided technically excellent but also tender and loving care. Tangible large-scale examples of enlightened care and contented people would expand our collective imagination and the national conversation. Without the public -- and body politic -- having a sense that people can be clean, comfortable, and well even during this time of life, the alternatives seem bleak and assisted suicide seems reasonable. It is not.
While there is no single, all-consuming "fix" to our healthcare system, where is the first place we should start?
IB: We should stop paying for bad care.
I love saving lives and am all in favor of highly intensive treatments of disease when there is evidence that such treatments work. I am, however, also aware that many people are overtreated -- that is, receive treatments for which there is no evidence of efficacy -- and subsequently die badly.
While Medicare and insurance companies tightly scrutinize eligibility and penny-pinch payments for home care nurses or hospice, they readily pay for any treatments of advanced disease in situations even when the treatments make no therapeutic sense and fall outside of established treatment guidelines. Those of us who have worked in healthcare for years know that often starting a next treatment is the easiest way for physicians to avoid having a necessary conversation with an incurably ill patient or a family member of a critically ill patient. This is not about rationing. It is about our payment system enabling the medical profession's addiction to technology and denial of death.
What advice do you have for the army of caregivers out there who are providing care for a loved one with a chronic illness?
IB: First and foremost, take care of yourself. Your health matters. Really. Don't abuse your body in caring. Eat as healthfully as you can, get sleep, get some fresh air and exercise. Don't feel badly about asking your family -- adolescent and adult children, brothers and sisters -- to help. Caring is a team sport!
Collectively, we boomers need to reclaim the end of life. Just like we did with pregnancy and childbirth those many years ago, we need to reframe illness, parent care, and dying as a part of living. We need to demand MUCH better medical care, but also raise our expectations for living fully -- and experiencing some degree of well-being -- as individuals and families through these difficult but normal times.
Where can your book be purchased?
IB: Ha! Anywhere where fine books are sold. Most independent bookstores and the chains and online sellers carry it. You can find a link at our website: TheBestCarePossible.org.
Thanks for asking!