Palliative and Hospice Care: Extra Support for the Whole Person
When you have cancer, advanced lung disease or another serious illness, you expect and receive treatments aimed at curing your disease or prolonging your life.
But who’s looking out for other aspects of your well-being as you cope with your condition?
What if you need better relief from stress, pain, fear or anxiety? Who can help you sort through what matters to you most as you make decisions about how your medical care fits into your life?
These questions may matter a great deal for your comfort and quality of life, and that’s where palliative care comes in.
Differences Between Palliative and Hospice Care
Palliative care acts as an added layer of support for patients and families navigating serious illness, by providing assistance with symptom management, emotional support, and counseling about difficult medical decision-making, says Eric Goodlev, MD. Dr. Goodlev is a palliative care physician at Einstein Medical Center Montgomery and the program director of the hospital’s Hospice and Palliative Medicine Fellowship.
Palliative care is frequently confused with hospice care, Dr. Goodlev says.
Like palliative care, hospice care focuses on quality of life through specialized supportive medical care.
Unlike palliative care, hospice care is intended for patients who have elected not to pursue treatments aimed at curing their disease, choosing instead to intensify care directed toward their comfort.
Both palliative care and hospice care focus on specialized supportive medical care for patients with serious illness.
“That can include difficult-to-control symptoms like pain or shortness of breath, anxiety or mood changes, appetite, things like that,” Dr. Goodlev says. It can also include counseling to help decide what the next steps are in someone’s medical treatment plan. It’s whole-person care, whole family care.”
Patients often don’t receive palliative care early enough in their disease journey to enjoy the biggest benefit, he says.
Palliative Care: Support With Continued Treatment
Palliative care can help patients and their families with a variety of concerns, even as they continue to receive treatment aimed at prolonging life.
Conditions appropriate for palliative care include:
- Any form of cancer
- Heart, lung, liver, kidney or vascular diseases
- Advanced neurological diseases, such as Alzheimer’s, Parkinson’s Disease or ALS
- Difficult to control pain, anxiety, depression, poor appetite, low energy, dry mouth and other symptoms that occur during a serious illness
“We often see patients with a new diagnosis of advanced cancer — and not necessarily terminal cancer — that’s causing a lot of symptoms or in which there’s some uncertainty about the future,” Dr. Goodlev says.
“Another type of patient who might benefit from palliative care would be someone with advancing heart failure or lung disease for whom the disease is starting to impact the quality of life.”
“We start with a comprehensive symptom assessment,” he says. “We ask, ‘What are you experiencing? What kind of pain, where is the pain? What have you tried? What medications haven’t worked?’ Same thing for appetite, fatigue, shortness of breath, anxiety, mood.”
Clarifying Values, Achieving Goals
Palliative care also focuses on “what’s most important to a patient if they were to get sicker quickly, what they would be willing to go through in the short and long term, what they are fearful of, and what brings them meaning and purpose in their life,” Dr. Goodlev says.
“Our goal,” he says, “is to be a bridge between the ‘life stuff’ and the medical treatment options – to make sure that the treatments help patients achieve their goals.
Research suggests that palliative care may help to improve both symptoms and quality of life, compared with patients who don’t receive these services. For some diseases, there is emerging evidence that palliative care may increase survival, likely by focusing on function and wellness in the face of serious illness.
Unfortunately, Dr. Goodlev says, “palliative care services are not initiated as early as they should be. I think that many people either don’t get referred or are fearful of it, or for some other reason there’s a barrier.”
Ideally, he says, someone with cancer should be referred for palliative care as soon as possible after diagnosis.
People with other illnesses, such as chronic lung disease or heart failure, may benefit from palliative care “as soon as there is a concern that the illness is impacting either function or quality of life, or when there’s a choice that someone’s facing and they might need some counseling.”
Hospice: Focusing on Quality of Life
Hospice is a specialized form of intensive palliative care “for people whose disease has become life-limiting and who have decided that things like chemotherapy, surgeries or going back and forth to the hospital are not in line with their values,” Dr. Goodlev says. For this reason, they stop receiving curative treatments and instead focus fully on intensifying medical treatments aimed at improving quality of life..
Hospice is intended for patients who have a life expectancy of six months or less.
Patients with the following conditions may be eligible for hospice care:
- Advanced cancer
- Advanced dementia
- End-stage heart, lung, kidney or neurological illness
A common misconception is that hospice “doesn’t provide treatment,” Dr. Goodlev notes. “The truth is quite the opposite. In many ways, the treatment on hospice is more intensive than someone might be getting in a different setting. It’s just the focus of that treatment is on maximizing function and comfort, not only prolonging life.”
Patients admitted to hospice at Einstein have access to:
- 24-hour on-call coverage to answer questions, discuss concerns and visit when needed
- Regular visits by the hospice team, including nurses, social workers, a chaplain, home health aides, and volunteers
- Assistance with personal care – such as bathing, changing bed linens and helping with light household chores – provided by certified home health aides
- Instruction for you and your caregivers to understand what to expect with your illness
- Counseling and emotional support
- Assistance with financial concerns, insurance and legal documents, such as power of attorney, living wills and end of life instructions
- Bereavement support for caregivers
- Assistance with activities of daily living by trained and supervised volunteers
- Spiritual support from a chaplain
- Short-term respite care for caregivers
- Inpatient hospice care for symptoms that cannot be reasonably controlled in the home setting
- Speech, occupational and physical therapy
- Nutritional counseling if needed
Greater Benefits From Earlier Hospice Care
Hospice care, like other forms of palliative care, often begins later than the ideal time for maximum benefit, Dr. Goodlev says.
“We often are called when someone is very, very close to death, as opposed to when things are going better and people have the luxury of time to think about what’s important to them. For many of those patients there might have been a loss of opportunity to focus on living well at home when they are sick, but not really sick.”
He thinks the reasons are complex. “Some of it is fear. There’s also a lot of misunderstanding as to what it is that we do. And I think it’s on us in the field to do a better job of communicating that.”
Deciding what kinds of treatment to continue depends on a person’s values, culture, faith, spirituality, morals, and life experiences, Dr. Goodlev notes.
“We as a medical system probably talk about hospice too late because we talk about patients’ values too late. That means simply asking someone what’s important to you, if you got really sick quickly? What are your hopes for the future? What are you fearful about?
“Open-ended questions like that are really important parts of any discussion about a serious illness, because someone may be feeling well now, and tomorrow and two months from now, but then five months from now something unexpected could happen. The time is now to hope for the best, and plan for what is most important if things don’t go as we hope.”