HYANNIS – Many people who would benefit from hospice care wait too long to request it, according to a recent study published in the Journal of the American Geriatrics Society. The study included 562 elderly patients, age 70 or older. During the last year of their life, only 43 percent of the participants utilized hospice. The median duration was only 12.5 days, suggesting that hospice should have been contacted earlier to minimize pain and suffering.
Those numbers don’t surprise Pamela McPherson, RN, the clinical liaison for Visiting Nurses of Cape Cod Hospice and Palliative Care at Cape Cod Hospital.
“That is typical,” she said. “It’s good that they had a few weeks. It’s better than none. But earlier is always better because we can provide so much more for the patient and for the family. So much of the hospice experience is based on trust – the patient learning to trust the nurses and the family learning to trust the nurses, that the interventions that we propose to them really will make a difference. And that’s hard to do in three days when the patient is literally actively dying.”
The Medicare benefit guideline that most other insurance companies also follow is that in order to qualify for hospice care, a person has to have a serious or life-limiting diagnosis where their life expectancy is six months or less, McPherson said. Comfort and symptom management are the primary focus of the patients’ care and they’ve decided to pretty much forgo curative treatment.
That doesn’t mean someone can’t change their mind, if a promising new treatment comes along. Anything the patient decides about end of life care can be reversed at any time.
One of the questions McPherson frequently answers is “What happens if mom lives longer than six months? Will she be discharged from hospice?” The answer is no.
“We do an evaluation every few months and we do recertification,” she said. “We have to document that the patient is declining in some way. It can be minor. It can be a weight loss. It can be declining appetite. It can be needing more pain medication or more shortness of breath. It doesn’t have to be radical, but as long as they have some decline we can continue to certify them on hospice. We have people who live for six months to a year and sometimes even longer.”
When Is The Right Time?
Determining how much remaining time is left is easier with cancer because the disease tends to follow a predictable course, McPherson said. Now that hospice is open to people with non-cancer diagnoses like respiratory failure, heart failure, liver failure and kidney failure, it’s a little
bit trickier to decide when the six months is at hand. Physicians and the hospice staff have many different tools they can use to evaluate a patient.
For the family members, McPherson advised looking for the following clues that it might be time for hospice:
Has the loved one been in the Emergency Department three or four times in the past couple of months?
Are they calling the physician more often?
Do they need to utilize the healthcare system more frequently than they used to?
Are they starting to take pain medication, or do they need to take more pain medication?
Are they spending more time in bed every day?
Are they falling frequently when they weren’t falling before?
Is their functional status declining?
Do they need more help now addressing things like bathing, getting out of bed and walking?
Are they weaker?
Do they feel more tired?
Are they losing weight?
“The bulk of our patients here at Cape Cod Hospital are elderly,” McPherson said. “We see a lot of people with chronic conditions that they’ve had for years but they are taking their toll on them slowly, like congestive heart failure or pulmonary disease or a combination of diseases. They’re slowing down, their functional status is declining, they’re coming into the ER more often and they have a higher symptom burden. Those people can really benefit from palliative care and hospice care.”
The VNA Palliative Care program focuses on symptom management so patients and their families can have a better quality of life. To qualify for palliative care, patients do not have to have the six-month diagnosis that you do with hospice. They can also continue treatment for their disease.
“The Palliative Care program, often acts as a bridge to the hospice program,” McPherson said. “The hospice program is a subset of palliative care. All hospice care is palliative care, but all palliative care is not hospice care. Palliative care is a philosophy of care. It’s a way of addressing chronic and serious illnesses.”
Benefits of Hospice
The first thing McPherson asks a new hospice patient is “What is most important to you?” The answer to that question is different for everyone, but the hospice team makes sure each patient is fully supported to do whatever things are the most meaningful to that individual.
“There are studies that show that people can actually live longer with hospice care,” she said. “It’s sort of counterintuitive, but because they’re in a place where they are comfortable, because they don’t have the burden of more treatment and more medications, and they are secure and they have a quality of life, they can actually extend the time of their life. So, it’s not only quality, but quantity.”
Each hospice team includes a case manager, a registered nurse, a social worker, a chaplain, home health aids, a bereavement coordinator and volunteers. Volunteers can sit with the patient if the family needs to go out. They can read books or watch movies with the patient. They can record the patient’s story as a legacy for the family. They can also run errands and offer music therapy and aroma therapy.
“Volunteers can really be used in any way that is helpful to the family,” McPherson said. “Many times, even after the patient themselves pass away, they can become lifelong friends with the family because they’ve almost become part of the family. You’ve walked through this amazing, really personal, intimate time with them so there are some wonderful relationships that are forged with the hospice team and families. And the longer you are there, the more you have the opportunity for that to happen.”
Most of the time, the hospice team goes into the patient’s home to deliver care, but they also go to nursing homes to tend to those who don’t have a caregiver at home or whose illness is too much for the family to handle in a home setting. The nursing home provides the care and the hospice team is there for an extra layer of support for symptom management. Occasionally, a patient needs to be hospitalized because their symptoms can’t be managed at home. When that happens, hospice still stays with the patient.
Supporting the extended family and friends is important while the patient is still alive, but that support continues after the patient passes on. Hospice offers 13 months of bereavement services to families.
“Hospice is a gift that you give not only yourself, but your family,” McPherson said. “Family members have less complicated grief when they have been able to work this through with professionals all along the way. And then they have the support of a bereavement team on the other side.”
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