The first thing Dr. Jarita Dihenkar would like people to understand is that palliative care is not hospice.
Dihenkar, a palliative care consultant at the VA Medical Center in Wilmington, explains that palliative care is a philosophy of care—a holistic, systematic approach to treating physical symptoms of people with life-limiting illnesses.
Palliative care focuses on quality of life as defined by the individual.
Hospice is a subset of palliative care for people in their last six months of life. Eighty percent to 85 percent of the people in hospice are on Medicare, which pays all of the costs, says Sheila Grant, a clinical educator for Compassionate Care Hospice in Delaware, but first the patient’s physician and the hospice medical director must sign a certification of terminality.
“Palliative care is a broader spectrum and an interdisciplinary approach to any person who has a life-threatening illness,” Dihenkar says, “We address the physical, social, psychological and spiritual aspects of his life.”
For many patients the priority is managing pain. Another patient may wonder how long he can continue working.
“Not everyone has the same need,” says Dihenkar. “We look at the person as a whole. What does he want? What are his goals? If a patient just really wants to go fishing one more time with his dad, how can we make that happen?”
Page 2: When to Seek Palliative Care
The time for people to seek a palliative care consult is when first diagnosed with a life-limiting disease such as diabetes, congestive heart failure, cancer or AIDS, or when they find themselves hospitalized frequently.
When patients begin to need hospice care, physicians will refer them to private and non-profit hospice agencies. In Delaware there are at least six: Heartland Home Health Care in Wilmington, Compassionate Care Hospice Foundation in Newark, Odyssey Healthcare in Wilmington, Seasons Hospice and Palliative Care in Newark and Delaware Hospice. Delaware Hospice, the first and only hospice in the state until the early 1990s, has offices in Wilmington, Dover and Milford, and a center in Milford. Vitas Innovative Hospice Care has offices in Newark and Milford and serves the entire state (451-4000, vitas.com).
“I wish that patients and families would have less reluctance to explore palliative care and hospice,” says Dr. Andrew Himelstein, medical director at Delaware Hospice. “When people wait until the last minute, it becomes crisis management. When they come in sooner, things go much more smoothly.”
“The big obstacles to getting [palliative] care are societal and the culture of modern medicine in this country at this time,” says Dr. John Goodill, director of pain management and palliative care at Christiana Care. “There’s a denial of death. Death is a part of life and natural, but it’s not accepted. For a long time [in the medical community] it felt like failure.
“The truth is that we cure people very rarely,” Goodill says. “Most of the time we help them live better with various levels of chronic disease. We talk treatments, likely outcomes, what lies ahead, and we encourage hope based in realistic expectations.”
Page 3: The Palliative Care Team
The interdisciplinary palliative care team usually includes a nurse practitioner, a chaplain, a social worker and a psychologist. All work with the physicians and specialists treating the patient. Other professionals are also called upon. They may include a pharmacist, a dietitian, physical and occupational therapists, trained volunteers and a bereavement counselor.
The key to the team’s effectiveness is communication with each other, with the treating physicians, with the patient and with the family. Palliative care teams meet weekly, or more, to discuss each patient’s best plan of care. They help families understand what is happening to their loved one.
“Palliative care is a big deal now because with advances in medicine people are living longer, and they’re living with disease much longer,” which can lead to complications and additional challenges, Dihenkar says.
Page 4: A New Medical Specialty
Nurses have been leading the way in the field, earning credentials in hospice and palliative care since the first exam was offered in 1994, a year after the National Board for Certification of Hospice and Palliative Nurses was founded.
Nurse practitioners Jo Ann Malgieri and Shirley Brogley have worked with Goodill at Christiana Care and have more than 40 years of hospice experience between them. They conduct two-day sessions each year, with the help of physicians, to train nurses in palliative care. They have trained more than 500.
“Shirley and Jo Ann are two of my heroes because right now there’s just not a lot of expertise in the area,” says Grant, vice president of the Hospice and Palliative Care Network of Delaware, which she helped to establish in February 2009. “The people who are doing this are really pioneers. But you’re going to see more nurse practitioners in this field.”
Page 5: Quality of Life for the Individual
Palliative care teams are faced with challenges when the family doesn’t know—or misinterprets—what their loved one wants. “We’ll hear family members say, ‘We never talked about it,’ or, ‘Mom wanted everything,’” says Brogley. “But mom may have meant she wanted everything within reason to get better.” Brogley and Malgieri will help patients and families understand what “everything” means and the realities of what that looks like. “It’s so important to have an advanced directive,” says Brogley. “Anything can happen to anyone at any time.” With an advanced directive your wishes are clear.
“Palliative care really helps to address the emotions of the patient,” Goodill says. “It’s what my concept of healing is. Healing means to make whole, and you can have healing even at the end of a person’s life in certain ways.”
“Our responsibility as caregivers is to make people better when we can and to relieve their suffering when we can’t. We want the medical care to put the patient at the center. We’re trying to get back to what we were doing before we had deep scientific knowledge and gadgets, get back to recognizing the whole person, and acknowledging and respecting their dignity.”
Hospice and Palliative Care Network of Delaware, hpcnd.org
Center to Advance Palliative Care, capc.org
Get Palliative Care, getpalliativecare.org
Palliative Doctors, palliativedoctors.org