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Better training for better end-of-life care

This is the front entranceway of the San Diego Hospice and Palliative Care Institute. Doctors, nurses and other specialists learn how to administer palliative care here at the institute. Patients are treated at the hospice and as well as at home.

- Jon McDonald

The Institute's provost Charles Von Gunten speaks with reporter Caitlan Carroll inside the hospice's reflection room. The reflection room provides families and patients a quiet place for contemplation.

- Jon McDonald

The San Diego Hospice and Palliative Care Institute provides patients at the end of their life with as much comfort as possible. Pharmacists work with patients and doctors to design treatment programs that promote relief of pain and suffering.

- Jon McDonald

Sonya Christianson and other physician fellows listen to Charles Von Gunten as he leads them in a discussion about one of the hospice patients. Physician fellows and other health care providers spend time at the institute learning about palliative care. They work as teams on each patient's case. Often times, a chaplain, nurse, psychiatrist, and cardiologist may all help craft a treatment plan for the patient.

- Jon McDonald

It's very quiet inside the hospice. Artwork lines the walls and there are sitting areas for patients and families to relax and sit with each other.

- Jon McDonald

Patients who received hospice care generally have a diagnosis of less than six months to live, but sometimes patients do get better and leave the hospice.

- Jon McDonald

Reporter Caitlan Carroll speaks with provost Charles Von Gunten outside the hospice. The grounds are designed to promote a sense of peacefulness. This area has standing monuments with photos of former patients and donors.

- Jon McDonald

There are a number of statues and art installations on the grounds of the hospice. Families can walk with patients or by themselves around the various statues and memorials.

- Jon McDonald

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TEXT OF STORY

Kai Ryssdal: As we told you yesterday, there is a huge cost to dying in this country. Billions of dollars are spent every year on care for patients during the last two months of life. It's not like anybody's talking about withholding medical intervention that would offer comfort or a cure. But the problem is that studies show a significant number of the drugs and treatments given to terminally ill patients don't have much effect on how long or how well those patients live out their lives. But there is another approach, offering more comfort at lower cost.

Marketplace's Caitlan Carroll reports.


Caitlan Carroll: Most Americans say they don't want to take extraordinary measures during the last few months of life and that they'd prefer to die at home. But three-quarters of Americans die in a nursing home or a hospital. Many of them dependant on machines to keep them alive. The costs, both emotionally and financially, can be huge. There is a movement now to do things differently. The first step? Listen to the patients.

Sonya Christianson: Our first question is always -- well what do you want? What are you hoping for? What are you expecting? And then to gear our care around that question.

Sonya Christianson is a doctor in family medicine. She's also completing a year-long fellowship at the Institute for Palliative Medicine at San Diego Hospice. Palliative medicine is a growing specialty that emphasizes working with chronically and terminally ill patients to plan their care. Palliative care teams are often made up of nurses, doctors, social workers and other specialists. They coordinate treatments and talk to patients about the risks and benefits of different approaches. The focus is on comfort, not cure.

Hospital worker 1: Who's your next patient?

Hospital worker 2: In 110.

The San Diego Hospice is one of the largest non-profit hospices in the country. Although most patients are treated at home, there are about a dozen patients here in the hospice.

Hospital worker 3: So we just wanted to say hello, and I was wondering what questions you might have for us as a team.

Carlos sits up in bed as Christianson and the rest of the team file in. Carlos is in his mid-thirties and has a new baby. He also has terminal cancer. When he came to the hospice, Carlos had a breathing tube and was in pain. He says he is more comfortable now and is taking fewer medications. He's breathing on his own, and he talks with his team regularly about his options.

Carlos: It's been great, the attention, the nurses, the staff -- they are very dedicated. I mean, I click a button and seconds later they're here.

Charles Von Gunten: Is that different than other places?

Carlos: It's different, yeah.

Charles Von Gunten is provost here. He leads the trainees in a discussion once they leave Carlos's room.

Von Gunten: So can I pick on some of you who are training? What strikes you about this case?

Christianson: He said that if things don't work out, he has the goal of just spending as much time as possible with his wife and child. And so to actually think about that and to think of an alternative to pursuing his chemotherapy is really a big deal, I think.

No one on the palliative care team advised Carlos to stop his chemotherapy. But in this setting, he's had a chance to think about his disease and how he wants to approach treatment. Chemotherapy can be grueling. He wants to be lucid and feel well enough to enjoy time with his family.

Rosemary Gibson is the author of "The Treatment Trap." She says too often patients end up on a train where all the momentum heads toward more treatment, even when it's futile.

Rosemary Gibson: Palliative care is creating an option for people to get off that train, to not even got on that train if they choose not to. Not just at the end of life, but also earlier in the course of illness.

A study published in the Archives of Internal Medicine found that hospitals with palliative care programs reduced costs by about $2,000 to $5,000 per patient. Patients are treated by teams, so there are fewer mistakes. Fewer tests and treatments are ordered, and hospital stays tend to be shorter.

Gibson: We've seen dramatic growth in the number of hospitals with palliative care programs from about 10 in the mid-nineties to about 1,400 now, which is astonishing growth in a very short period of time.

Not everyone is moving so quickly. Many people are not familiar with palliative care or they misunderstand it as a fast track to death. Medical students aren't required to study it, and many doctors feel they'll be seen as giving up on a patients if they call for a palliative consult.

Doctor Gary Pasternak says there was a time when palliative care would have been the right answer. He had a patient named Julie who was dying of AIDS.

Gary Pasternak: She had had about all of the treatment that she could stand.

Pasternak realized he had been trained to cure but not care for the dying. After a spending a year studying palliative care at the San Diego institute...

Pasternak: I possess skills now that I didn't have then. So there's a lot of things I could do different. You know, Julie wherever you are. I'm really eternally grateful to her.

A number of states are crafting bills that would support more end-of-life counseling and palliative services. These efforts may give patients in the future more say over how they live before they die.

In San Diego, I'm Caitlan Carroll for Marketplace.

Ryssdal: Caitlan visited the Institute for Palliative Medicine at San Diego Hospice this spring. Her trip was part of a California Endowment Health Journalism Fellowship, a program of The Annenberg School for Communication & Journalism at USC. Carlos, the patient she spoke with, died not long after her visit. We've got resources about palliative care on our website, Marketplace.org.

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Talia Morrison's picture
Talia Morrison - Jul 30, 2010

I am a former grief counselor intern for San Diego Hospice. It warms my heart to hear a story on the amazing work being done at this facility. However, this story only touches on the incredible contributions SDH makes to the San Diego communities. The entire staff, including the Center for Grief Care and Education, live with the mission to provide respite and healing in so many creative ways. Check out Camp Erin for another perspective! It was an honor to intern at SDH.

Elaine Regalado's picture
Elaine Regalado - Jul 23, 2010

Healthcare professionals in communities lacking palliative care resources can now access nationally recognized palliative care consultative and educational support through the hotline provided by The Institute for Palliative Medicine at San Diego Hospice. This free hotline, called PAL-MED CONNECT (1-877-PAL-MED4) is a grant funded hotline available to physicians, physician assistants, pharmacists, nurse practitioners & nurses to assist in handling complex symptoms as they arise. www.palmedconnect.org

Carol Conner's picture
Carol Conner - Jul 23, 2010

The subject of how we die is very near to my heart, as I work in a hospice program whose goal is to make every patient have the best death experience possible. This story presents some of the issues that prevent that from happening to more people. How wonderful it would be for all of us if we accepted that death is as much a part of this life as living, and we had the forethought to plan for it as we do for all other important occaisons in our lives. Please do more education on this issue, and hopefully, one day we will be able to say that death is not the fearful creature that many of us currently believe it to be.

Dee Riley's picture
Dee Riley - Jul 22, 2010

I ejoyed your piece on palliative care. Although healthcare providers other than physicians were briefly mentioned, your story focused mainly on physicians. (By the way, I know many "doctors" who are NOT physicians. It would be more correct to refer to physicians as such, rather than the more generic term of "doctor"). If you really want to represent what hospice & palliative care are about, interview registered nurses, licensed practical nurses, and certified nursing assistants. They are the real "front line" and "backbone" of hospice care both in-patient and in home care environments.

Hospice care was first taught formally at the Yale University School of Nursing in the 1960s. Palliative care encompasses the patient and family in a holistic manner, which is the primary focus of nursing care. Physicians and medical care tend to focus more on the treatment of disese processes. Considering all aspects of a patient's condition, including psycho-social and spiritual factors is more the domain of nursing care. A day with a hospice nurse might make an even more interesting and accurate portrayal of palliative care.
Thanks.

Jim Hayes's picture
Jim Hayes - Jul 22, 2010

Thanks to Marketplace for bringing this topic to the public!
American medical consumers must learn that 1) they are going to die someday and 2) nothing can prevent it.
The "for profit medical business" uses the final days of people's lives to make their biggest profits while making life more miserable for the person involved and all their families.
The only way to stop it is to speak frankly and - maybe this would work - refuse to pay for services rendered that keep people alive when they should be allowed to die in peace.
BTW, a doctor once told us that unless our 95 year old grandmother had immediate brain surgery, she would die. Well she lived well past that and the doctor - who we found out had just taken a course on brain surgery - had to find his victim to practice on elsewhere!

Christine Hartman's picture
Christine Hartman - Jul 22, 2010

THANK YOU for this story! I serve as a hospice volunteer, so the content is near to my heart. More importantly, having a story like this on Marketplace feeds a much-needed dialogue about how our country's handling of end-of-life issues (medical and emotional) has a long way to go. The more people (especially medical professionals) who are educated about this, the better.

Kim Barnett's picture
Kim Barnett - Jul 21, 2010

Thank you for bringing Palliative Care to a wider audience. Many states are now instituting legislation to include the POLST (Physician Orders for Life Sustatining Treatment) a document that CLEARLY delineates a patient's end-of-wishes. California's EMT's are trained to look for this form when responding to calls. Since instituting this, we have helped countless patients live their life where they wanted to, not how circumstances dictated. An excellent and informative website:
http://finalchoices.org/polst.php

Ben Calmes's picture
Ben Calmes - Jul 21, 2010

My partner of almost 13 years spent his last days at San Diego Hospice. He had ocular melanoma that metastasized to his liver and became systemic. He was in terrible pain at home. The staff of San Diego Hospice was able to help him fulfill his wishes and he died peacefully without pain. It is a wonderful institution and the staff there are phenomenal. They treat patients and families with the utmost dignity and compassion. I am so glad you did this important story.

Bill Lichty's picture
Bill Lichty - Jul 21, 2010

I cought this broadcast today on a local PBS station. An excellent program. I hope that I will be able to take advantage of palliative care should I become terminally ill sometime in the future. I don't believe that there are any benefits, for a terminally ill patient, with the standard chemo and/or radiation treatments. Prolonging the life of a terminally ill person only benefits doctors, researchers and pharmaceutical companies. This is the time, in a person's life, when comfort in familiar surroundings is of most value.

Stacy Jackson's picture
Stacy Jackson - Jul 21, 2010

Thank you for this story. I am a Crisis care nurse at San Diego Hospice and it is a great place to work, and you can see why.

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