Stigma Surrounding Palliative Care & Hospice

By: Kelly Hendershot

My own personal shift in how I viewed hospice was on Wednesday, April 22, 2009 during the Family Group (a support group for caregivers of someone diagnosed with cancer) at Gilda’s Club Quad Cities.

My friend Bill’s wife Karen had died the previous weekend. Bill was relaying to the group that when Karen began hospice care, she was afraid people would see her as quitting. I began to ponder how many times in the previous years and a half I had used the phrase “not ready to quit” in regards to my husband’s terminal brain cancer diagnosis.

Bill proceeded to say something that really packed a punch: “It takes more strength for someone in that situation to choose hospice than to continue with more treatment.”

This was just the beginning of my shift. A few lines down from recording this memory in our CaringBridge journal, I also noted: “That being said, even though Justin and I do occasionally discuss hospice, he’s not ready for it yet.”

Knowing what I know today about palliative care and hospice, I regret that fact that it was still another two weeks before Justin began hospice care on May 4, 2009.

“I want to remind you all that choosing hospice is not quitting,” I wrote on May 6, 2009 when letting our loved ones know about this decision. “It’s just about changing focus.”

We would ultimately only benefit from hospice care for just a smidge over two weeks. Justin died at the age of 30 on May 20, 2009.

I’d like to blame our ignorance at not beginning hospice care sooner on our young age, but I can’t. There’s still a strong stigma again both palliative care and hospice care that I hear from more senior members during the support groups I myself now facilitate at Gilda’s Club.

Now that you know my story, I’d like to clear up some misconceptions you, your loved ones or your patients may have regarding palliative care and hospice. To do so, I’ll be paraphrasing from and adding a personal spin to the National Hospice and Palliative Care Organization’s (NHPCO) “Palliative Care of Hospice?” fact sheet.

What is the focus?

In terms of cancer, palliative care can be given concurrently with curative treatment. It focuses on pain and symptoms to ideally improve both quality and quantity of life for the patient. Palliative care is not hospice care.

Hospice care very much embraces palliative care, but it’s focus shifts from quantity of life to quality of life by addressing pain, symptoms and stress as end of life nears. Medicare defines this phase as “a life expectancy of 6-months or less if the disease runs its natural course.”

I’ve heard our members both refer to it as “graduating” or “flunking out” of hospice when, after 6-months their eligibility has been reviewed, they’ve been told they no longer qualify for hospice.

Who can receive this care?

Anyone with a serious illness is eligible for palliative care, regardless of life expectancy. Because palliative care is often confused for hospice care, patients may have an adverse reaction to its suggested use. We’ve had some really great, informative discussions in our Family Group that have begun by a member saying, “We’re not ready for palliative care.”

Often times palliative care is provided intermittently over the course of an illness or disease. According to NHPCO, “How long an individual can receive care will depend upon their care needs, and the coverage they have through Medicare, Medicaid, or private insurance.”

Hospice is most commonly used by those with months versus years to live and in most cases requires a terminal or progressively debilitation prognosis. According to NHPCO, “As long as the individual patient meets Medicare, Medicaid, or their private insurer’s criteria for hospice care.”

Are curative treatments involved?

In general, palliative care patients are concurrently receiving curative treatments – unless otherwise limited by insurance restrictions.

When palliative care was first suggested for Justin, I was against it. I thought it was my duty and responsibility as Justin’s wife to be his primary caregiver. Justin was more amendable to the service once an oncology nurse reframed the benefits for palliative care for us. She explained that palliative care, while focusing on symptom management for the patients, was an opportunity to provide respite for caregivers. This often gave caregivers themselves a chance to focus on their own quality of life by shifting some of the more routine caregiving needs to the professionals – or at least well-trained volunteers.

Hospice should be considered at the point when the burden of any given curative treatment modalities outweighs the benefit coupled with prognosis. Other factors to consider and discuss, based on individual patient situations, are treatment modalities that no longer provide benefit due to a loss of efficacy.

Hospice may involve treatments, but such treatments focus on ways to improve quality of life rather than to cure the cancer. For instance, Justin remained on his steroids to control the brain edema throughout hospice.

What services are provided?

According to NHPCO, palliative care provides the following:

• Pain and symptom management
• In-person and telephonic visits
• Help navigating treatment options
• Advance care planning
• Referrals to community resources.

As a caregiver, I loved palliative care. It provided two very private people a way to get comfortable having outside help coming into our home an eventual smoother transition to hospice when the time came.

According to NHPCO, “ there are four levels of care that can be provided to patients per CMS regulations (routine, inpatient, continuous, and respite care).” Those services include:

• Pain and symptom management
• 24-hour on-call service
• In-person visits
• Medical equipment
• Related medications
• Inpatient care
• Continuous care in the home
• Respite care
• Volunteer services
• Spiritual care
• Bereavement and counseling services.

From the caregiver perspective, our hospice team made me not feel so along in my role. Sure, we have plenty of great, supportive family and friends willing to step in to assist with anything we need. But the hospice team was truly empathic to what I was facing as the caregiver, and eventual widow, because of their experience and choice to work in such a difficult field.

Who pays for these services?

My 29-year-old self was vastly undereducated in this area. Ignorantly, I focused all of my attention on making sure my husband would have the best death possibly in his situation. Fortunately, we have very good health insurance at the time. Others are not so fortunate.

To an extent, palliative care is covered by Medicare Part B, Medicaid and private insurance. However, there may be a co-pay and not all treatments/medications are necessarily covered. T

In the case of hospice, Medicare Part B, Medicaid and private insurance typically pays for what is related to the terminal prognosis. Therefore, not all medications, services, and/or equipment are covered. For instance, room and board at a hospice facility would be considered an out-of-pocket expense.

For more specifics on how to pay for either service, consult a case manager through your insurance company, a social worker or someone  from your treatment center’s billing department.