Caring and Comfort at the End of Life

Hospice focuses on patient's wishes

by Tara Wood on November 1, 2003 - 1:07pm

Smack in the middle of a frosty Michigan winter, Jackie Edwards Jr. was steaming like a hot summer day with anger.

Edwards was fuming mad because he had learned that his mother had passed up tickets to a Metallica concert; she worried it would harm his health.

Dawn Edwards feared that going to a raucous concert by the heavy metal band during cold weather would simply be too much for her son. At the time, Jackie was 19 and dealing with increasing health challenges because of his spinal muscular atrophy type 2.

"He really let me have it," she said. "He said, 'I will decide what's worth dying for'."

Jackie Edwards, Jr.
Jackie Edwards Jr.

The incident was indicative of Edwards' fiercely independent attitude and determination to be in control of decisions that affected his life, including the right to choose hospice for his end-of-life care.

Making his own choices was typical for the young man from Ferndale, Mich., who ran his own graphic design company from his computer, and was an accomplished artist, a straight-A student, a poet and the author of a memoir.

Edwards, who passed away at 26 from the effects of SMA in April 2002, faced his health care needs with his eyes wide open. He had staunch support from his family, who respected his wishes never to receive invasive treatments for his disease symptoms.

Edwards was under hospice care for three years, during which the hospice program provided everything from detailed medical care to stress-easing gestures like delivery of a weekly meal for the family from hospice volunteers.

"We learned to depend on them a lot," Dawn Edwards said.

Although Edwards' length of hospice care wasn't typical — most are six months or less — it was a representative example of fulfilling hospice priorities: maintaining comfort and dignity throughout the dying process.

In fact, talk about "hospice" and you'll hear stories of loved ones who received the ultimate in comfort and care during their final days of life.

That's the idea and goal of hospice, as stated by several hospice organizations nationwide.

A team approach to caring

The National Hospice and Palliative Care Organization defines hospice care as "a team-oriented approach to expert medical care, pain management, and emotional and spiritual support expressly tailored to the patients needs and wishes."

In addition, hospice care includes support for a patient's loved ones. It's centered around the idea "that each of us has the right to die pain-free and with dignity, and that our families will receive the necessary support to allow us to do so."

Generally, people are "referred to" or "go on" hospice when doctors believe that, if their disease or illness runs a typical course, they'll die within six months.

Day-to-day medical care and other concerns are then turned over to hospice staff, who evaluate the patient and set up a care plan for pain management and symptom control.

Often, patients remain in their own homes, with a family member as the main caregiver. Hospice workers such as nurses or aides visit as needed and are always on call, and they regularly consult or collaborate with doctors, therapists and social workers.

Hospice services can vary greatly even within a community, but most hospice care plans encompass services such as supplying drugs, medical supplies and equipment, emotional and/or spiritual support, and training or respite for caregivers.

Need-driven care

Jackie Edwards initially required a visit from a hospice nurse weekly, but "they would be there every day if you needed it," his mother said recently.

Her son's care was virtually seamless, Dawn Edwards said, because hospice staff and his doctor worked particularly well together to help him get anything he needed, such as assistive equipment or medications.

For something like intravenous delivery of medication, "Hospice sets it up and monitors it, but the doctor has to prescribe those things," she said.

Beyond the medical details, hospice volunteers can provide services that can help a patient and family.

Edwards requested and received an aide who assisted him with daily activities, such as turning pages in books he read for his continuing college studies, or sometimes just keeping him company.

"Every week a meal would be prepared for us, and volunteers would come out and deliver it. They really got to know him, and would do special little things for him," Dawn Edwards said, such as bringing Easter baskets or holiday treats.

Volunteers were also available for services like babysitting or covering Edwards needs at home when the family needed to run an errand.

"Even if you just want to go sit in the living room, at least someone is in the room with [the patient] to keep them company, to read to them or talk to them if you just want to take a little break," she said. "They were just very helpful all the time."

Bereavement care and continuous support

Judith Kay Hill
Judith Kay Hill

Grief counseling and bereavement care for surviving family members is another service of many hospices. Social workers, counselors and clergy help a family get through the difficult times following a loved one's death.

For the family of Felicia Lucas of Edmond, Okla., hospice made a crucial difference as they cared for her mother, Judith Kay Hill. Hill was 55 when she died from amyotrophic lateral sclerosis (ALS) in October 1997.

In addition to care and comfort for Hill during the final stages of her disease, hospice provided valuable support to Hill's husband, Tom, after she died.

Lucas said the support for her dad was invaluable, particularly since her family was physically and emotionally exhausted from caring for Hill during her rapid decline.

"They picked up the slack where we were lacking," Lucas said. "They would call Dad. They would send him little books, little cards, little letters. They would call and say, 'Tom, how ya doing? Tom, do you need to go out for coffee?' They were really great."

The Edwards family also praised the bereavement and grief support they received from hospice.

Hospice workers attended Jackie's funeral and kept in touch throughout the next year. They made themselves available on the first anniversary of his death, Dawn Edwards said.

"I was very thankful for them."

Many hospices are connected to churches or hospitals operated by religious organizations. Thus, a spiritual emphasis is at the forefront of some hospices, but just an option in others.

Lucas said that, although her family had a strong base of support from their own church, hospice spiritual support was also beneficial, especially when her mother was near death.

"Many times the nurses themselves were spiritual help, too," she said.

Not problem-free

Randy Troyer
Randy Troyer

But, as with many other aspects of health care, hospice care is vulnerable to its share of problems: frustrating regulations, administrative red tape, lack of qualified workers, and sometimes a for-profit business mode of operation that complicates the process.

Teresa Troyer of Spokane, Wash., learned this the hard way when her husband, Randy, had ALS. Randy Troyer, 36, was cared for by hospice for three months before his death in June 2001.

Initially, hospice provided a nurse's aide who helped with tasks like bathing, and gave therapeutic massages to his mostly paralyzed body. The aide not only gave Teresa Troyer a well-needed break, but, "Randy loved this guy. Those two were like best buddies."

Hospice also arranged to have somebody mow her lawn once a week. "That was just one more thing that I didn't have time to do," said Troyer, who works fulltime as a bus driver.

"For the most part they were pretty good. If Randy needed something that they had, they were right there with it — up until...," Troyer said, with a sarcastic emphasis on "until."

In Randy's final days, Troyer said she found herself in a battle over getting an appropriate hospital bed for her husband, who was increasingly uncomfortable and losing sleep.

Although Randy had wished to remain in his own bed, hospice staff convinced him to try an adjustable hospital bed for his wife's sake.

"I wasn't getting any sleep and I was driving a night shift. I'd get home at midnight, and he'd keep me up all night because he wasn't comfortable," Teresa Troyer said.

Hospice had a twin-sized hospital bed delivered, but it was far too small for Randy's 6-foot, 4-inch frame.

"I kept saying, You've got to get this out of here. This doesn't work. You need to get him something that fits him. And this is where the fight started," Troyer said.

Teresa and her family furiously searched for a bigger bed and found one, but hospice refused to get it because they didn't have a contract with the company that sold it.

She finally turned to her insurance case manager for help, who convinced hospice to get the larger bed. Troyer ran into similar hassles when she asked for additional nursing coverage at night so she could sleep.

Cost never should have been an issue, she said, especially since Randy Troyer was covered by his own and his wife's private insurance plans.

"They were awesome up until the point they had to put out money," Troyer said. She learned later that her health insurance company has discontinued working with that hospice. She also learned that she had to "stand her ground" to be an appropriate advocate.

When time runs out

Lucas, too, experienced good and bad aspects of hospice. In fact, her family was forced to switch hospice services in the middle of her mother's care because, essentially, Hill didn't die according to plan.

Ordinarily, if the six-month time frame is exceeded, hospice works with the patient's physician to get the referral to hospice care extended.

Although the hospice staff had promised to re-evaluate Hill's status after six months, they instead discharged her, Lucas said. At the time, Hill, a nurse herself, wasn't eating well, couldn't talk and was blinking to communicate "yes" or "no."

"They said, 'We're sorry, we can't help you'," Lucas said. "I felt like they were penalizing Mother for not dying. We were so upset, my dad was just livid, and all of us were scared, you know, what would we do?"

Fortunately, someone told the family to try the county hospice, and it took over Hill's care.

"They said, We don't want to know the ifs, ands or buts, we just know she's dying. They provided everything," Lucas said.

Avoid problems — shop around

With the benefit of hindsight, Lucas attributes some of her family's problems to the hospice's lack of knowledge about ALS and the fact that hospice was then new where she lives. Services from the initial provider have since improved, and she and many volunteers, with the assistance of MDA, have helped educate her community about ALS.

The experience also inspired her to make a career change. After some 20 years as a wedding consultant, she became a licensed practical nurse, working primarily in a long-term care facility and with patients who are on hospice.

Now, whenever she's helping people who need hospice services, she emphasizes that all hospices aren't the same.

If you have the luxury of time and more than one hospice organization in your area, then "shopping around" is wise in order to learn the differences and find what will best suit your needs, Lucas said. See "More About Hospice" for more on choosing a hospice program.

She likened the selection experience to "choosing JC Penney over Sears," meaning that, while both are department stores, you'd likely choose one for purchasing a dress and the other for a refrigerator.

Getting recommendations from former hospice clients, support groups, and MDA health care service coordinators or clinic staff can greatly ease the process.

It's also wise to ask if a hospice has specific experience with neuromuscular diseases.

"The road is so different with everyone that if you can find someone who has that experience, it will really help," Lucas agreed.

These organizations and others offer general information about hospice and finding a program in your area.

Hospice Foundation of America
2001 S St. NW, Suite 300
Washington, DC 20009
(800) 854-3402

Hospice Patient's Alliance
4541 Gemini St., P.O. Box 744
Rockford, MI 49341-0744
(616) 866-9127

National Hospice and Palliative Care Organization
1700 Diagonal Road, Suite 625
Alexandria, VA 22314
NHPCO Helpline: (800) 658-8898
For a nationwide database of hospice providers, go to NHPCO's Web site and click "Find a Provider." For a list of questions to ask when shopping for a hospice, click "Hospice & Palliative Care Information," then "How to Select a Care Provider."


A: You can start by looking in the Yellow Pages, but referrals from people with firsthand experience are often the most reliable sources. Good resources include MDA staff, support group members and others who are dealing with neuromuscular diseases. Also, the National Hospice and Palliative Care Organization (see "Resources" above) has a nationwide database.

A: In most cases, hospice care is provided in the patient's home. Hospice care also is provided in freestanding hospice centers, hospitals, nursing homes and other long-term care facilities.

Hospice organizations may be nonprofit or for-profit. Nonprofit hospices usually take clients who have no means of paying for the services.

A: NHPCO compiled a checklist of questions that pertain to the patient's needs, family support, physician and hospice staff roles, after-hours policies, pain management policies and more.

Some questions you might want to ask: How does the hospice staff, working with the patient and loved ones, honor the patient's wishes? Are family caregivers given the information and training they need to care for the patient at home? What is the role of the patient's physician once hospice care begins? How quickly does the hospice respond to after-hours emergencies?

A: Hospice care is covered under Medicare, Medicaid in most states, most private insurance plans, HMOs and other managed care organizations. Families usually have very low out-of-pocket expense, such as co-pays.

For example, Medicare initiated a Hospice Benefit in 1983, and it's covered under Part A. Medicare pays the hospice program a per diem rate that's intended to cover virtually all expenses related to addressing the patient's terminal illness.

A: Most hospices have extensive experience with patients who have diseases like cancer, but they may not see people who have neuromuscular diseases nearly as often. It's advisable to find out if a hospice you're considering has experience with the disease in question. MDA can help educate hospice staff about the intricacies of the neuromuscular diseases in its program.

Also, equipment is often a concern. MDA health care service coordinators often encourage patients to obtain any special or costly durable medical equipment before going on hospice care. Many hospices rely on equipment loan closets and can't afford to supply higher-tech devices such as power wheelchairs, positioning systems or communication devices. Also, some insurance benefits — including Medicare have specific hospice coverage that, for example, provides for manual wheelchairs but not power wheelchairs.

A: Most hospices don't accept patients who use ventilators because a vent is viewed as a life-prolonging form of treatment, but there are some exceptions. The Hospice Patient's Alliance advises that ventilator users might need to work closely with their physicians to obtain hospice care, and that ventilator use can also complicate the hospice "certification" process for insurance or Medicare coverage.

Feeding tubes, however, are generally acceptable as a means of providing comfort and sometimes the best way to administer medication.

Sources: MDA Health Care Services Coordinators Vicky Gould (Spokane, Wash.) and Amy Anderson (Oklahoma City); National Hospice and Palliative Care Organization; Hospice Patient's Alliance; Hospice Foundation of America.

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