At the core of hospice and palliative care is the belief that you have the right to die pain-free and with dignity, and your family will receive the necessary support to allow you to do so.
The theme for this year's hospice palliative month is It Must Be Love . Ann Broderick, M.D. director of Palliative Care at University of Iowa Hospitals and Clinics and former medical director for Iowa City Hospice, talks about hospice and palliative care:
What is palliative care and how is that different from hospice care?
Palliative care is a multidisciplinary approach with patients. And when I say multidisciplinary, I mean that the team has nurses, social workers, physicians, music therapists, and chaplains to help patients with chronic or life-threatening illnesses.
We treat symptoms such as pain, nausea, and delirium and help patients decide how they want their disease treated, particularly at the end of life. Whether they want to be in an intensive care unit, want feeding tubes, or other life-prolonging measures, we try to intervene early in the course of the illness, perhaps at the diagnosis of emphysema, pancreatic cancer, ALS, heart failure.
In general, palliative care is done in the hospital, though not always. Hospice care is also multidisciplinary and has an extensive team helping patients and families approach the end of life.
Every person is entitled to hospice care with their insurance, whether it is Medicare or private insurance. Relatively few people take advantage of this program as it's not generally known that they're entitled to this program and that it can be helpful for dementia, heart failure, emphysema, as well as cancer. It should be considered whenever a patient has a chair-to-bed existence and perhaps introduced early on so that the patients and families know that there'll be a support for them to nurture them all at the end of life.
Who is on the teams for palliative care and hospice care, and what is the difference between the two?
The palliative care team, as I mentioned, has nurses, physicians, social workers, chaplains, and music therapists and this isn't much different than hospice care, but the great value that hospice introduces is that it also has bereavement care for the family 13 months after the patient has died, so an incredible level of support for a long time. In general, hospice wants to support the family to the first anniversary of their death, and that's why they go for a full 13 months. The other great value-added aspect of hospice is that at the heart of the hospice is volunteer support. Volunteers have been known to do everything from dishes, to reading books, to just sitting if a patient is alone and has no family to be with them.
When is the right time to have a palliative care team see a patient?
We think that a palliative care team should see a patient who has been admitted multiple times in a year, or perhaps admitted from a nursing home, or a patient for whom the goals of care are unclear--whether they would want to go to an intensive care unit and have ventilator treatment. But we're also specialists in symptom management, particularly pain, nausea, delirium, and shortness of breath.
When is the "right" time to talk about hospice care?
This is one of the greatest dilemmas in the United States is when a patient is admitted when he has six months or less to live and nobody's crystal ball has worked very well for this. The average length of stay in hospice is only 20 to 22 days nationwide and here in Iowa we fit in that average.
And yet the patients are really entitled to a full 180 days, which is six months of hospice support. Medicare has tried to encourage earlier care and earlier support for patients and still hospice does not get to support patients as early as they would like.
My sense is that when a patient has a life-threatening illness, it's important to introduce to the family that hospice will be available to them, and then when the patient is in a chair-to-bed existence, it might be the right time to have the hospice admissions nurse come and visit. And a patient and family can call hospice, this does not require that a physician make the first call.
Is hospice care available after hours?
Hospice, nationwide, has always provided 24-hour care. I think nurses are available 24 hours. Some smaller hospices might struggle with this, but that is really the standard nationwide, that there's 24-hour care.
How do hospice and palliative teams work to keep the patient comfortable?
The first thing that both hospice and palliative care teams recognize is that there's more than physical discomfort. Patients have psychological discomfort, which is a fancy way of saying that they're grieving. Patients who are dying or have chronic illness are grieving and these teams recognize that grief is an important component of their pain. They also frequently have spiritual pain, despair, wondering why this is happening to them.
Perhaps our value added is that we recognize that there is psychological and spiritual pain in addition to the physical distress. We use all sorts of medications to keep patients from being uncomfortable or having shortness of breath or nausea. And we also are active in making the diagnosis of delirium which is a confused state that is frequently seen at the end of life. Perhaps it's actively treating on those symptoms with the patient's goals in mind that help us take care of patients.
Can someone be cared for by hospice if they reside in a nursing facility or other type of long-term care facility?
Absolutely. Hospice goes where people are and where home is defined, so they will go to a long-term care facility, in some cases to an assisted living facility, and at home.
Is UI Hospitals and Clinics involved in any research with regard to hospice care?
I think research is at its very beginning nationwide in end-of-life care. One of the more exciting pieces of research is being done by Michelle Weckmann, a psychiatrist and the medical director at Iowa City Hospice and an assistant professor University of Iowa Hospitals and Clinics. She's doing research on delirium at the end of life, working hard to have people recognize this altered state of consciousness so that it can be treated. It can be very distressing to family members watching somebody be in this altered state of consciousness and whenever it can be recognized and treated, we probably get our greatest thanks from those families. |
