At End of Life, Hospice Care Supports Patients and Families
Ann Allegre, MD, practiced internal medicine and geriatrics for 18 years before joining Kansas City Hospice & Palliative Care as its first full-time physician. Hospice and palliative care is a relatively new medical specialty, and Allegre was the first in the region to make it a full-time practice focus. "I find that being a hospice physician is very rewarding," she says. "The most important thing is that we get to really care for people. We get to know them as persons and to work with their families; we're not just focused on their lab values or their disease state. This is a time when they don't have time to fool around with small talk, so we are often part of conversations about what's most important in their lives."
Hospice care is a particular approach to care, offered to people who have a terminal illness.
It could be available in many different locations, including a nursing home or hospital, a person's own home, or an inpatient hospice facility. Hospice care treats the whole person, not just the disease, focusing on the needs of both patients and their families. In addition to clinical care, it also helps with practical issues such as insurance coverage and transportation, as well as emotional and spiritual needs.
A trained hospice team has developed a level of expertise about the process of death. They understand what is likely to happen, what needs the patient and family are likely to experience, and what is available to meet those needs. They are aware of various methods available to manage pain and other symptoms. "Hospice teams are comfortable with symptom management," Allegre says. "This includes offering appropriate levels of medication as well as nonpharmacological intervention such as dietary adjustments and energy conservation."
The hospice team takes the time to help people deal with their fear, and to reassure them that they won't be alone in this process. The team is available to help people deal emotionally with the whole meaning of their lives, and even to explore what they think may happen after they die.
The guidelines followed by Medicare and most insurance plans say that hospice is intended for people who are probably in last six months of life. However, the experience of Kansas City Hospice is that most people don't take advantage of hospice services until they are very close to the end of life. "Our median stay in hospice, in 2010, is about 13 days," Allegre says. "Standard medical practice and the expectations of the public have a predilection towards aggressive care, and we end up with people coming to hospice very late in the course of their illness. If patients are admitted to hospice in the last few days of life, that doesn't give them and their families time to focus on what is most important and meaningful in their lives, or to prepare for the coming death."
Team With Multiple Skills Cares for Patients
Hospice care is provided by an interdisciplinary team. Under the Medicare hospice benefit, this team must include a doctor, nurse, social worker, chaplain, aides, dietary counseling, bereavement counseling, volunteers, and physical and occupational therapy as needed.
Although each chaplain has been trained by a particular denomination, their role in hospice is to serve the needs of patients and families regardless of their specific religions or nonreligious affiliations. "Our chaplains are really there to address questions of meaning," Allegre says. "In hospice, almost everyone has questions: why is this happening to me? what do I think is going to happen after I die? how will my family cope?"
Kansas City Hospice also has art and music therapy available, because they've found that these expressive therapies often allow people to address their fears and concerns and grief in ways that go beyond words. "We have trained therapists who help children to express their feelings through artwork," Allegre says. "Often adults are not as open to art therapy, but some of them do choose to work with materials or crafts." Generally adults are more open to music therapy, she notes. The music therapists play old favorite songs and sing with patients. "It is a shared positive experience," Allegre says. "Often the old songs bring up memories, and there is life review involved in that. Some patients want to leave a legacy. They have recorded audios for their families, or even written songs."
Massage therapists are also part of the team at Kansas City hospice. "Massage can aid in pain management, particularly when muscle tension or stiffness increases the pain," Allegre says. "Massage is also very comforting and caring. At the end of the life, at our inpatient facility, they mainly do very gentle massage. They might just rub on lotion, so it's not a deep massage, but it is a comforting touch."
Spiritual Care at the End of Life
When I spoke with Allegre, she was on her way to a Buddhist meditation retreat hosted by the Tenzin Gyatso Institute, in Berne, New York. "I first came to meditation practice and Buddhism as a way to help me with this work," Allegre says. "I attended a course called 'Contemplative End-of-Life Care: a Certificate Program for Healthcare Professionals,' which combines online learning with a week-long residential retreat. Nowadays I'm on the faculty for the course, which is open to professionals working in health care and social services, as well as students and trained volunteers in end-of-life care."
Allegre found that meditation and other practices derived from the Tibetan Buddhist tradition gave her new tools to help her patients. "As a physician I know how to help people with pain and other physical symptoms, but there was still suffering in this process. There wasn't much more I could do using the tools that come with the medical profession. Through meditation practice, I gained the ability to settle myself and be more fully present with each person. This in itself helps people: attentive, open listening is always valuable for someone who knows they are nearing the end of their life."
The palliative care team at one of the hospitals in Kansas City offers a memorial service twice a year for families of patients who have died in the hospital. Recently Allegre had a chance to speak at the service, and she offered a practice she'd learned from the Contemplative End-of-Life Care program.
"There were 20 or 30 people in the hospital chapel," she recalls. "They were Catholics, evangelicals, African-Americans, Hispanic, a broad group that reflected all the variety of this city." She explained that the Essential Phowa is a prayer for the dying that comes from one of the world's great religious traditions. "I invited them to visualize a being of perfect wisdom and boundless compassion, as a presence of radiant light. We visualized powerful rays of love and compassion coming from this presence, flowing through us, filling us with forgiveness and healing energy. We visualized these rays of light blessing and purifying our loved ones who have died. Even though the attendees were not accustomed to guided visualizations, several of them commented that this was a very meaningful experience for them, as they remembered their loved ones. For me, as a physician, I was so grateful to have the opportunity to share this level of experience with my patients and their families."
Kansas City Hospice & Palliative Care: http://www.kansascityhospice.org
The website offers downloadable booklets about various aspects of end-of-life care, including "Simple Facts About the Control of Pain," "Understanding Grief," and "Talking to Children About Death."
Rigpa's Spiritual Care Education Program: www.spcare.org
Compassion and Presence, a Four-Day Training for Healthcare Professionals and Volunteers; Oct. 15–18, 2010; Tenzin Gyatso Institute, Berne, NY. For more information, go to www.spcare.org or e-mail email@example.com. Contemplative End-of-Life Care: a Certificate Program for Healthcare Professionals: A program offered by Rigpa's Spiritual Care Education Program and Naropa University. It combines the mindful approach of the Buddhist wisdom tradition with the best practices of hospice and palliative care. Beginning in January 2011, the program includes 15 weeks of online learning and an 8-day residential retreat in February 2011. For more information, go to naropa.edu/extend. CEUs available.
The Essential Phowa Practice: http://www.spcare.org/practices/phowa.html
Elaine Zablocki has been a freelance healthcare journalist for more than 20 years. She was the editor of Alternative Medicine Business News and CHRF News Files. She writes regularly for many healthcare publications.