Hospice Leader’s Focus: Life Before Death

In the past, physicians didn’t specialize in helping people deal with their final days of life. Instead, they often focused purely on survival, even if a patient was terminally ill.

Over the last four decades, the hospice movement has greatly changed how people die in the United States. Specially trained physicians, nurses and caregivers now devote themselves to helping dying patients find what they are looking for — freedom from pain, nausea, worry and spiritual angst.

Hospice care isn’t universally accepted among patients or doctors some of whom push until the very end of life for a cure or remission of illness and avoid the issue of impending death. That hasn’t stopped the more than 70 percent of eligible San Diego County residents from going into hospice care, according to the state.

With 800 staff members, including 45 chaplains, San Diego Hospice is the largest hospice program in the county and one of the biggest in the nation. I sat down with Dr. Charles F. von Gunten, provost at The Institute for Palliative Medicine at San Diego Hospice, who’s been in the field for 20 years. We talked about the evolution of the hospice movement, its biggest challenges and the lessons he’s learned about how people die.

What is hospice care?

Hospice was designed to relieve suffering and improve quality of life for people in the last months of their lives, knowing that people have their physical selves, their emotional selves, their practical selves, and their spiritual dimensions.

If you’re going to relieve suffering for someone, you have to reach each of those four dimensions. And it’s not just patients alone. It’s in the context of their families.

What was the usual way of dealing with the dying before hospice began to grow in popularity?

The broad approach was either to treat the person as if what they had was curable. Even if the cancer treatments weren’t working, they’d keep giving them because it was important to go through the motions.

The alternative was to say the treatment isn’t working, and medicine has nothing more for you. The patient was abandoned.

Neither model leads to very good outcomes.

Are doctors still uncomfortable about giving a grim prognosis to a patient?

When doctors in the U.S. are surveyed, two-thirds say they’re hesitant to reveal a prognosis to a patient unless they’re asked for it.

Doctors are waiting for patients to bring it up, but patients are hesitant because they don’t want to distress their doctor. Patients overwhelmingly like their doctors and want to take care of them.

You can see there’s a conspiracy of silence.

What part of the death process is the most challenging to treat?

The spiritual domain. Every human being has a spiritual dimension, which I would define not in terms of religion, but in terms of meaning and purpose in life.

When one is sick enough to die, that meaning and purpose is frequently challenged: Finding meaning even though you’re not able to work anymore. Looking for forgiveness, frequently for yourself.

We find overwhelmingly that when there is pain that is difficult to control, it’s not because we don’t have the right drugs. It’s because it may be in the emotional or spiritual dimension.

How has hospice changed since it began to be developed?

Hospice care began by thinking it was an alternative way to care for a few patients who wanted it. Then we did the research, and now we can say this represents the best way to take care of somebody at this stage of their lives.

We started by primarily taking care of people with cancer. Now we care for people with dementia or stroke or who have had catastrophic accidents or who have emphysema or unusual genetic diseases. We’re using the same principles and applying them to a whole bunch of different diseases.

For those people who haven’t had direct experience with hospice care, we still encounter some of the myths, that hospice care is about hastening death, that they’re giving up and you won’t get any more care, that it’s where they increase the morphine until you go to sleep and die. Those are all myths.

How has the actual care changed?

We’re much more sophisticated. Our ability to relieve suffering is more advanced now than in the history of medicine. We use new drugs, and we occasionally use surgical therapies and radiation.

The most recent data shows that people who get hospice care live longer than people who don’t. There shouldn’t be a surprise. If you have good attention to family issues, make sure you get the medications you need and doctors and nurses are looking in on you at home, you actually do better.

At San Diego Hospice and The Institute for Palliative Medicine, we have patients who’ve been with us for years. Doctors still think they’ll have less than six months to live if their diseases follow their normal course, but they’re just doing better than average. They don’t need to be discharged from hospice care.

It seems like it would be really hard to work in hospice care, that it would be emotionally draining.

That’s one of the myths: that we’re all depressed, we walk around with long faces and cowls over our heads, that there will be quiet sobbing somewhere.

It’s not like that at all. We’re energetic, brightly dressed people who are enthusiastic about the things they can do for people. Laughter, love and joyfulness is the overall spirit of hospice care. For our 800 employees and 600 volunteers, it’s about this sense of “Oh, I can make a difference.”

What have you learned about death through your work?

What’s important is that it’s not scary. Symptoms can be controlled to the patient’s satisfaction, and that doesn’t mean you have to be sedated.

It is routine to find meaning in these weeks and months, for patients to say, “This is the most meaningful time of my entire life, I wouldn’t miss it for the entire world,” and regret the sense of fear and trepidation they had.

What about the physical act of dying?

For most people it is not dramatic. The usual way people die is that they spend most of their time sleeping and they die in their sleep, with or without medication.

The most important message from all the research that’s been done is that normal dying is not painful. When the body is dying, it gradually shuts down. There are processes that make it comfortable.

When we get in trouble is when doctors with misguided enthusiasm turn dying into something that is catastrophic and difficult. One of our biggest jobs is to explain what normal dying is to families and doctors.

What should loved ones know when a person is dying?

Most people assume that doctors and nurses have studied the relief of suffering a lot as they became a doctor or nurse. It turns out they haven’t. The trust that your doctor or nurse knows the right thing to do may not be true.

Stand up and be an advocate when someone you know is suffering. Don’t just assume it’s inevitable, and nothing else can be done. There is so much we can do.

Please contact Randy Dotinga directly at randydotinga@gmail.com and follow him on Twitter: twitter.com/rdotinga.