reprinted from Issue 18, Spring 2014 of Frontiers of Medicine (PDF)
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When I was in medical school, we learned about lots of diseases that can end your life, but we never learned how to take care of people who were dying," says Steven Pantilat, MD, the Alan M. Kates and John M. Burnard Endowed Chair in Palliative Care.
As a resident, he cared for a young mother with advanced leukemia. His supervising attending physician kept performing interventions, but never discussed the possibility of death with her. She soon died. "We couldn't cure her leukemia, but there was much we could have done," says Pantilat. "No one asked if she wanted to write a letter to her daughter, or would prefer to go home. That case really haunts me. So much of my work today is to make sure that doesn't happen again."
Pantilat is the founding director of the UCSF Palliative Care Program, which brings together a team of doctors, nurses, social workers and chaplains to help seriously ill patients achieve the best possible quality of life for as long as possible. "The ability to manage symptoms such as pain and shortness of breath is always job one, because they are very insistent – they grab your attention and don't let go," says Pantilat. "We have the expertise and tools to figure that out – it's the rare case when we can't make someone's pain better.
"We also want to understand people's hopes and fears," says Pantilat. "People say, 'I worry I'm going to be alone,' or 'I hope I get to see my daughter get married.' We can use this information to help them make decisions that reflect their goals and values."
The Palliative Care Program was established in 1999, one of the first in the nation to offer support to hospitalized patients and their families dealing with illness-related pain and stress. Hospice is the most familiar type of palliative care, but the field can help many other patients. "At UCSF, we are pioneering all the ways to get palliative care," says Pantilat. Through a generous gift from the Hellman Foundation (please see article on the next page), the Palliative Care Program will expand to serve patients living at home with serious illness through home- and office-based palliative care services, and will enhance education and research.
For example, while the program has helped cancer patients through the Symptom Management Service, it is now partnering with other specialties to combine palliative care with treatment for conditions like dementia and heart failure. Such care has been shown to reduce pain, improve quality of life, help people live longer and relieve stress on patients' loved ones. "It's not, 'Do you want to treat your heart failure, or do you want palliative care?'" he says. "Palliative care is an extra layer of support on top of the best care you can get for your illness."
The program addresses concerns beyond physical symptoms because these things matter to patients. "Not only do they have pain that's not being addressed, they also have social, psychological and spiritual needs," says Pantilat. "We design programs that meet those needs."
Communication and Self-Care
The Hellman Foundation's gift is also helping educate palliative care fellows, and teaching communication skills to medical students, residents and nurses. "Nearly all doctors and nurses have to share bad news at some point," says Pantilat. "Being able to talk compassionately, empathically and effectively with people is fundamental to all medical practice."
One key is asking patients open- ended questions. "As doctors, we hate the silence," says Pantilat. "I say, 'Just be quiet for two minutes and let people talk. They're trying to tell us things that are really important, but difficult to talk about.'
"Another powerful technique is to say, 'I wish,'" continues Pantilat. "So often you'll hear the doctor say, 'There's nothing more we can do,' which is terrible, because there's always something we can do. By saying, 'I wish there was something I could do to make your cancer go away,' it reinforces to the patient that I am on their side and want to do all I can. It transforms the conversation. I can then follow up with, 'Let's think about what we can do to help you feel better and have the best quality of life for as long as possible.' Or, 'You really want to go home, but you're worried that your wife can't take care of you – let's think about that.' We can always do more to help patients, even when we can't cure the underlying illness."
To teach these skills, UCSF uses standardized patients – trained actors who portray patients and provide feedback. Learners also receive intensive coaching after meetings with real patients. "These conversations are not quick – they often take an hour," says Pantilat. "To give someone feedback takes a lot of time if we are going to do it right."
Trainees also learn about self-care. "If you're depleted, you have nothing to offer," says Pantilat. "If you're not present with yourself, you can't be present with patients." Trainees identify which situations are most difficult for them, what helps them feel balanced, and where they can find support. "It's also learning to integrate these practices inside the clinical setting, like taking a deep breath before going in to see a patient, or using the washing of your hands as a meditation of feeling your own body," says Pantilat.
Discovering What Works
"Palliative care is a relatively new field – we've only been certifying physicians in it since 2008, and there is much research yet to do," says Pantilat. "At UCSF, we not only create innova- tive programs but then test them. For example, what makes patients' shortness of breath better? Palliative care embraces the art of medicine, but it's important the art be informed by science."
He sees parallels in how our culture has evolved around the beginning and end of life. "Fifty years ago, childbirth was a sterile medical event, with the mother under general anesthesia," he says. "Over time, people said, 'We don't like it this way. Birth is a natural process,' and they demanded changes.
Similarly, we need the public to demand that serious illness and the end of life not be medical events if they don't need to be, and help people understand that palliative care is about living better and longer."