Two of the most misunderstood words in medicine? “Palliative” and “hospice.”
Patients and their families fear the worst at the first mention of either word, because they assume death is imminent. And while sometimes that could be the case, often it is not.
We explore these services in the name of bringing clarity to a scary subject and help families better understand the services and how to ask the right questions.
Novant Health Palliative Care
Dr. Kimberly Case, a palliative care physician in Charlotte, is part of a team that helps patients navigate a serious illness. At Novant Health, this specialized service provides an extra layer of support through a team approach that includes a physician, nurse, social worker and chaplain. It is appropriate at any age and any stage, including when treatment is still being pursued.
“Oftentimes, palliative care doesn’t begin soon enough. It happens when there is a crisis or someone is admitted to the hospital,” Case said. “One of the things I’m working on is educating people that we can start these conversations around decision making and goals of care sooner.”
Dr. Catherine Moore, an oncologist at Novant Health Cancer Institute, often refers patients to Novant Health Palliative Care to help manage symptoms and side effects, such as pain. While it’s especially helpful for those with cancer, people with congestive heart failure, chronic obstructive pulmonary disease (COPD), kidney disease, Alzheimer’s, Parkinson’s or amyotrophic lateral sclerosis (ALS) can also benefit.
It helps not only with treating pain, but also depression, fatigue, nausea, loss of appetite, difficulty sleeping, anxiety and any other symptoms that may be causing distress.
“I try to help people understand that palliative care doesn’t necessarily mean hospice care,” Moore said. “It doesn’t mean they’re not a good candidate for treatment. Beyond helping patients manage their side effects, palliative care can assign a social worker who provides counseling. It’s that extra TLC because a cancer diagnosis is stressful. There are a lot of difficult and overwhelming decisions to be made,” Moore said.
Other palliative care services include:
- Providing support for the patient’s emotional and social needs, spiritual needs or concerns.
- Providing guidance for making treatment decisions in the future.
- Providing support for caregivers and other loved ones.
- Assistance with advance directives, such as a health care power of attorney and living will.
Improving quality of life during a serious illness
When to consider hospice care
While some are resistant to palliative or hospice care, Case is on a mission to inform people it’s “not scary.” In getting to know patients, she asks about family life and emotional support. Another question is ‘What brings you joy?’ as she finds it helps people be more open to having tough conversations.
“It’s important to be realistic and specific about your goals, because sometimes those goals won’t be realized,” Case said. “What I tell people is ‘let’s plan for the best,’ but if that doesn’t happen, let’s put something in place just in case.”
It’s no secret that cancer treatments – surgery, chemotherapy or radiation therapy – can take their toll on the human body. Patients can experience fatigue, nausea, vomiting, diarrhea, hair loss and neuropathy — a numbness, tingling or muscle weakness because of nerve damage or dysfunction.
For some, the symptoms of treatment are too burdensome. Conversations about stopping treatment can be difficult. Moore often approaches this as a as ‘quality of life’ versus ‘quantity of life’ discussion. She said it's typically life events and age that often surface as the biggest factors.
“From my standpoint, I think the younger you are, the less likely you’d consider stopping treatment. Someone may have children or just the feeling they have more to accomplish or experience. A lot of people feel that way and it’s completely natural and understandable,” Moore said. “People who are older tend to have thought about their mortality a little bit more. Sometimes they are more at peace with the natural processes happening so the idea of stopping and trying to focus on being with family or friends is easier to grapple with.”
But age is hardly the only consideration. Others include the type of cancer, how someone has done with prior treatments, the confidence the physician has, and what treatment options they have yet to explore, Moore said.
In some cases, a patient is referred to hospice care. Hospice care is support provided when you have decided to pursue comfort only instead of curative treatments for your illness. However, it is not uncommon for patients to leave hospice care because their condition has improved.
A common misconception about hospice is that it’s a place someone must go. Most patients stay at home for hospice care, though inpatient hospice care is available should the need arise.
“It's a benefit that most insurances pay for and it covers in addition to the care provided in the home, the equipment related to their illness, as well as medications,” Case said. “If a caregiver needs a break for five days, the patient can be admitted to a hospice unit for respite stay. They come in, hang out with us for five days and it gives that caregiver the chance to take a rest or to go somewhere.”
Case said people often delay seeking hospice services for fear that the end is immediate. However, studies show that people who choose hospice care can often live longer than those who do not. It’s about making the most of each day and enjoying the best quality of life possible.
Choices and Champions
Novant Health’s Choices and Champions initiative encourages patients to choose a health care “champion,” or someone they know will stand in their corner when they can’t speak up for themselves, and think about other medical choices they may face in the future.
Designating a health care power of attorney or deciding if you want to be resuscitated can be tough decisions to manage, but Moore said it’s also “one of the best gifts” a person can give their family.
“This can be emotionally gut wrenching, but making decisions early allows patients more dignity and comfort and that’s what we all deserve,” Moore said.
The goal is to provide resources for patients to start conversations with their family members, understand their care options and make those decisions now – so that their wishes are clear to their doctors and, most importantly, their family when the time comes. For more information, click here.