My mother had a massive stroke in 2012. Within the next few years we lost her, as well as my father and my father-in-law. If I hadn’t been introduced to the world of palliative care and hospice care I would not have survived.
I’ve come to have great respect for the doctors, nurses, social workers and other professionals and volunteers in this field. They give their time and compassion to help patients weather serious health issues. They not only provide physical care, but emotional support.
Unfortunately, many people have no idea what palliative care is, and they don’t fully understand hospice. For anyone facing the discomfort and limitations of chronic illness, or navigating end-of-life issues, either could be critical.
Team approach to care
Palliative and hospice care are similar in many ways. A key component of both is the team approach involving a variety of professionals and volunteers providing care with a focus on comfort. And family members are considered an integral part of each care team. Diagnoses that lead to each are also similar, with cancer and heart disease being the most common.
“We all have to stand up with our significant others, our parents, our children, the important people in our lives who need help,” says Sheryl Santi, a business owner, former oncology nurse and primary caregiver multiple times over, who is an active supporter of hospice in Rockland County, NY.
“We know there will be bumps on the road of life, but serious illness is a mountain. To get through it you need the support of the medical world around you,” she said.
The main difference: palliative care is for people with serious illness and the goal is to improve the quality of life for the patient and the family. It can be offered at every stage of illness all the way until the end of life. Hospice care is for those who are declining and approaching the end of life and have chosen to focus on comfort and quality. As the National Hospice and Palliative Care Organization (NHPCO) puts it, hospice focuses on caring, not curing.
Palliative care began as a hospital-based program but increasingly it is offered at home. The care team may have any combination of doctors, nurses, social workers, yoga therapists, massage therapists, physical and occupational therapists, nutritionists, chaplains and other professionals or volunteers. A palliative care team works alongside a patient’s primary care doctors to provide ongoing care even while the patient is receiving treatment to either cure their disease or prolong their life, according to Nathan Goldstein, site chair for Geriatrics and Palliative Medicine at Mount Sinai Downtown in New York City.
He added that the goal is to minimize pain and other serious symptoms, increase function and also provide an added layer of support to patients and families as they navigate a complicated medical system and make decisions about care.
There is no prognosis criteria or timeframe required. Palliative care is treated like any other medical services in that providers bill insurers and all or part of the care is covered depending on the plan.
More than 6 million people in the U.S. are potential candidates for palliative care. Yet only 14 percent of people worldwide who could benefit from palliative care receive it. That’s despite the fact that palliative care lowers costs and increases quality of life. Factors include a lack of awareness, and a shortage of palliative care doctors.
In addition to cancer and heart disease, other illnesses that are typical for palliative care are lung disease, kidney failure, dementia, HIV/AIDS and ALS.
Palliative care evolved out of the hospice movement but only became an established specialty in 2006 after a push by advocates, according to Harvard Magazine. However, the field has grown rapidly and today the Center to Advance Palliative Care reports that there are palliative care programs in 75 percent of hospitals with more than 50 beds.
More than 6 million people in the U.S. are potential candidates for palliative care. Yet only 14 percent of people worldwide who could benefit from palliative care receive it. That’s despite the fact that palliative care lowers costs and increases quality of life. Several factors contribute to this. Among them — a lack of awareness, and a shortage of palliative care doctors.
Goldstein described a cancer patient who was referred for palliative care because she had severe pain that initially prevented her from going for radiation therapy. The team worked on controlling the pain and she is now able to receive the treatments that are important to her recovery.
Other symptoms that palliative care can treat include nausea, lack of appetite, shortness of breath, fatigue or constipation, as well as psychological symptoms such as anxiety, depression or difficulty coping with the illness.
Patients receiving palliative care may come to a point, sometimes after years of treatment, where they want to transition to hospice, Goldstein says. Such a decision is made by the patient and family in consultation with the care team.
Hospice care can be provided in a hospital, at home, in a long-term care facility, or at a hospice center. An individual plan is developed by the hospice team, which is typically on call 24/7. The goals are to minimize pain and other symptoms, support the patient and family with the emotional aspects of preparing for the final stage of life and providing grief support to family members.
Members of the hospice team can include the person’s personal physician, the hospice physician or medical director, nurses, hospice aides, social workers, spiritual and bereavement counselors, other professionals and trained volunteers who all provide comfort and support as needed.
In order to receive hospice care a physician must certify that the patient’s prognosis is six months or less. But there can be a process for recertification at the end of that time. Hospice has been provided as a Medicare benefit since 1983.
In addition to cancer and heart disease, typical diagnoses for hospice patients include dementia, lung disease and stroke. The average time people receive hospice services is 71 days and 48 percent of people covered by Medicare at the time of their death were enrolled in hospice.
The concept of hospice began in England in 1948 and was introduced in the U.S. in 1963, according to the NHPCO. After the 1969 publication of the best-selling book On Death and Dying by Elisabeth Kubler-Ross, the collective conversation turned to end of life choice, participation, comfort measures and spiritual and emotional support. Through ongoing advocacy over the next several years the hospice movement in the U.S. was launched.
To find the right care, be it hospice or palliative care, families should consult with their medical team. Palliative care providers can also be located by state through the website getpalliativecare.org and most of those palliative care organizations can refer to a hospice. There is no requirement for a physician’s referral for palliative care, but that is a requirement for hospice. The referring physician could be the primary care doctor or the specialist treating the disease.
My mom benefited from both. So did I.
In the four years following her stroke, my mother made numerous return visits to the hospital from her long-term care facility. That’s when I learned about palliative care and hospice. My mom benefitted from both. So did I.
Because she had brain damage from the stroke and resulting dementia she couldn’t communicate her needs and was often anxious, confused and scared. The palliative care and hospice doctors, nurses, aides, volunteers and music and art therapists all formed relationships with her that gave her a calming sense of familiarity, home and security.
Their presence provided me with peace of mind that I was not alone in our journey and that she was well taken care of. Their advice and support were invaluable and enabled me to manage her care in a manner I know she would have appreciated. They eventually helped me decide that it was okay to not send her back to the hospital anymore, stop treatment and focus on keeping her pain free and comfortable. Near the end they recommended and supported my decision to move her from the long-term care facility into a hospice residence.
Through those years, knowing that she was being cared for in such a comprehensive, supportive and kind way enabled me to be fully present with her and have the best connection possible with her as she declined.
With the understanding and reassurance of some very special care teams I was able to let her go when it was time.
Video created by Laura Shapiro for United Hospice of Rockland in New City, NY.
Linda Kallman is a freelance writer with a special interest in family, health, aging issues and dementia.