Byock is also co-founder of The Missoula Demonstration Project: The Quality of Life's End and a former president of the American Academy of Hospice and Palliative Medicine.

Crowley: Are attitudes of the medical community toward end-of-life care changing?

Byock: The medical community has changed a lot in a short period of time. It's been stung not only by the assisted suicide debate but also by findings of the SUPPORT study by Joanne Lynn of George Washington University's Center to Improve Care of the Dying, among others, and other studies that show that any way you look at it, medical care for people who are dying is deficient. And it often inadvertently tends to compound problems that people who are dying experience. I think as a result there's a real willingness to look at what's wrong and respond in a more satisfying professional manner.

Crowley: We can't place all the blame on the medical community for poor end-of-life care. What can the rest of us do to change things for the better?

Byock: The real problem is cultural. In this regard, it's like Walt Kelly's Pogo -- we have met the enemy and they are us. We can't imagine what good dying might look like, so we just want to forestall it and not think about it. The alternative is to explore what it would be like to die well in a contemporary context. If we do so, we're going to find it's not that hard to achieve. That as poignant as this time of life is, it's just another difficult time of life. We can support one another.

In my book "Dying Well: The Prospect for Growth at the End of Life", Riverhead Books, 1997, I emphasized again and again that caring for our loved ones and our friends -- even our neighbors -- as they die clearly requires expert medical attention. But, more profoundly, is too important to leave to the experts.

We really have to take back responsibility. First, assuring that expert care is provided, that people aren't allowed to suffer in pain or with other, unaddressed symptoms. But also seeing that people are honored for what they have been. That ... this time of life ... and the life cycle of their family is honored also.

So hospices do very simple things that aren't strictly medical -- ... things like listening to people's stories, helping them in their reminiscences, maybe creating a safe place for families to say hard things ... that matter most. This is very important stuff that is critical to what people have taught me is good dying or wellness in dying.

As soon as we turn care for the dying over to medical experts, it would still be medical care for the dying. The person who is dying is still seen as less than, as weaker, as somehow sick or deficient. I would argue that.

By definition a person's body is sick in their dying. But that should not be misconstrued to mean that the patient is in some way deficient or lacking.

People can be well even as they die. In fact, in the stories I have focused on in "Dying Well", people can actually grow toward a sense of personal health in their dying that is so antithetical to our current cultural mind set about death and yet is so obviously true. But it's not something we talk about.

Crowley: What will be the impact of managed care on hospice?

Byock: I think there are two possibilities related to palliative care and hospice in managed care -- both dangers and incredible opportunities. The danger is that a lot of the prevailing corporate mind set of managed care is that you widen your profit margin if you do less for people.

The hospice approach is really about the skilled nursing care that keeps people out of the hospital -- but in hospice we also strongly stress the interdisciplinary nature of the team approach to care -- that's really where I think a lot of the magic resides in hospice care. So with managed care there's a fear that hospice might "unbundled", covering medical care for example, but not social worker services, and reduced to a sham of what it is and can do.

But I think that may be a phase, a developmental phase in managed care. ... Some of us think that the next phase, maybe in three or four or five years, will be a competition based on quality. When that happens, and to the extent that happens, the hospice approach to care is good news for the managed-care organization -- it creates multiple win-win situations. It's efficient, cost-effective, clinically effective and greatly increases satisfaction among subscribers.

My own emphasis in hospice is on a life cycle or developmental approach -- seeing dying as a part of life of the individual and the family.

Within an integrated health-care system such as managed care, that approach could be easily integrated into care for the patient and family throughout the life cycle. There are some places that are really working at doing this. If it were done fully, hospice as a discrete program may not even be needed. You could look at palliative care as an extension of the caring system, and yes, there would be a team that would be more involved at the last stage of illness. But it might not be necessary to identify it in a discrete way if we were honoring the wholeness of the person and family and using Medicare appropriately to support people and families in critical stages in human life.

Crowley: Are anti-fraud efforts by the Health Care Financing Administration (HCFA) and the Department of Health and Human Service's Office of the Inspector General leading any hospice organizations to turn people down?

Byock: There's no question it is. They [HCFA] have used very flawed means of doing this audit and they have caught some of the most progressive, well-managed, socially responsible hospice programs in their net, programs that have been attempting to extend care to people with emphysema and congestive heart failure and kidney failure and people who do live in nursing homes, all of which is very much consistent with congressional intent, by the way.

While there obviously is fraud in any industry that's a $2 billion-plus industry, the methodology used to find it must distinguish between progressive programs and unscrupulous programs. None of us condone fraud -- we would absolutely cooperate, as hospices have cooperated, with ferreting out fraud. We do not want fraudulent programs in the hospice community. But the methodology with which this is being conducted is unprofessional and not befitting the office of the inspector general.

Crowley: Tell me about the Missoula Demonstration Project.

Byock: The reception in the community has repeatedly exceeded our wildest dreams. We started with a series of open public meetings, just a few people and a steering committee who liked the idea, photocopying an announcement about the meeting and getting a room at aging services or a local church to just convene.

On two occasions we significantly underestimated the size of the room that we'd need -- people were standing in the halls to get in, people from all walks of life, clinical people from the hospital or hospice or home health agency or nursing home, but also people from faith communities, people from the schools, local senior activists, people from aging services and the senior center, administrators, people from city government -- it was remarkable.

People were interested in hospice professionally and personally. A number of people were interested in the concept of using this community as a laboratory of experience, exploring what works and what doesn't work locally as a demonstration of what might be achieved nationally. It was an idea that just has captured the imagination of a lot of people.

I actually had been thinking about the idea of the project for a while, thinking about it in terms of the Framingham Heart Study, just sort of thinking that, boy, it would really be helpful to be able in a contemporary American community to study how we do things -- and then consciously set out to do it differently.

Crowley: Missoula is a fairly homogeneous community. Do you think lessons learned from the project can be transferred to other, more diverse communities?

Byock: I do. Community is a process of people sharing a sense of belonging, accepting mutual responsibility for one another. ...

We all have communities -- in our schools, in our workplaces, in our neighborhoods, in our apartment buildings, in our faith communities -- people have to choose to be isolated.

So yes, we are not a microcosm of all of America but ... we're going to establish a baseline of experience within a community that does look a lot like the dominant American culture and having that database will hopefully facilitate a study of how subcultures are different.

After we've studied it, we are going to very consciously as a community look at what we've learned about ourselves and have an ongoing, open discussion about how we can make it better.

As you know, we're developing means by which the lay public and all of us in the community can be supportive, by listening to people's stories, by bringing pets in to shut-ins, by perhaps doing some intergenerational things, by opening discussions about an individual's values and making sure their values are reflected in their later care.

Crowley: What are your personal hopes for the project and for hospice?

Byock: I hope I'm able to raise all of our expectations about how we live and how we care for others and support others through the end of life. I think the success related to dealing with this phase of life is closer than we might imagine and that as difficult a time as it is ... we really have the opportunity to see this crisis resolved not only in our lifetime but even within the next decade.

I think we are at the verge of a cultural shift in the way we approach dying. It's a shift even more profound than the cultural change that occurred around childbirth in the 70s. It's a shift toward understanding that as difficult a time of life as dying is, as inherently arduous and emotionally sad and poignant, there is a remarkable opportunity for living fully ... through the time of living we call dying.

If we can do that culturally I think the medical profession has a leadership role to play in ... making sure that sources of physical distress are well managed -- pain, breathlessness, other areas of discomfort -- and that people's medical care is ... expert but not intrusive.

The model that hospice offers to the health-care system really looks a lot more similar conceptually to newborn care than it is to adult medicine. In adult medicine, we're very problem-based. If you don't have a problem, you don't really warrant our evaluation, our testing or our treatment. We do minimal prevention in adulthood -- very small amounts. But in early childhood we look at the person, the infant, and their family as the unit of care. Not only do we treat their medical problems, we do a robust amalgam of prevention looking for, or teaching about, problems that we know are a part of this turbulent time of human life. We consciously preserve and promote the opportunity for the family to grow as individuals and together.

I think, when at its best, that's exactly what hospice does at the end of life -- treating medical problems expertly, preventing foreseeable problems ... and preserving and promoting opportunities for growth in families.

Crowley: Are there people for whom hospice is not the right choice?

Byock: Sure. It's often said people die as they have lived. Well, that's a half-truth. They have a right to die as they have lived. They have a right not to talk to me at all or to hospice. But I'd be wary about confusing a laissez-faire attitude with respect for somebody's autonomy -- because people frequently change in remarkable ways even as they die. It's their right to do that, too. I sometimes think we disguise in terms of autonomy a cultural nihilism about the end of life. We can't do it right anyway -- so why bother?

Crowley: Thank you.

---

AARP Bulletin Newsmaker Interview with Ira Byock
Susan J. Crowley, June 1998

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