Considering Hospice Benefits

Kathie Campbell, a marketing director for Hospice of the Panhandle in West Virginia, writes about some of the benefits of hospice care, and urges her community to take advantage of their services.

Think for a minute. Think about your family, friends, neighbors, co-workers. Think about the people with whom you go to church and the people you see in the grocery store. Think about those with whom you share a hobby or attend club meetings. Think about the people you meet at your children's school. Of all those people - the people you relate to day in and day out - it is probable that at least one of them would benefit from hospice but is not receiving the service.

In 2008, just 32 percent of all the people who died from end-stage illness in the Eastern Panhandle died under the care of hospice (45 percent of that one third had just one month of care or less). Close to 1,000 people died in Berkeley, Hampshire, Jefferson and Morgan counties in 2008 without any support from hospice.

Think about this for another minute. Those nearly 1,000 people - people we know - suffered with the challenges of advanced disease alone, without the team of professionals and volunteers that cares for the patient while also supporting the family and caregivers. They never had access to the 24-hour, on-call support that would have prevented unnecessary trips to the emergency room or admissions to the hospital. They did not have the expert pain and symptom management from the hospice nurses and physicians. And they never reaped the financial benefit of hospice, a program that includes professional staff visits to the home, medicines, treatments, equipment, supplies, respite care, crisis care, hospitalization and bereavement care for the survivors - all fully covered by Medicare, Medicaid and most private insurers. All these people missed out on one of the best health care programs available today.

When Others Make End of Life Choices

On the How We Die website, clinical bioethicist Viki Kind discusses her role on a hospital “advocate team”, that makes decisions about end-of-life when a patient has no advance directives, or family or friends to help guide these decisions.

One of the hardest things for me to witness is when a patient has no one to speak for them at the end. We call this person the unrepresented patient or the unbefriended person. This is someone without any friends or family who can make sure they have a good death.

So what happens to them? In some cases, a public conservator or guardian is appointed to make their decisions for them. This is a stranger making decisions for another stranger. There is nothing personal or meaningful in this process.

If there isn’t a guardian available, a group of people at the hospital will make the decision for this person. Sometimes we call this an advocate team or a moral community. This group usually consists of a doctor, nurse, social worker, chaplain, members of the ethics committee and community members. As a group they will make the decision whether someone should live or die. Unfortunately this decision is based on very little information about who the person is or what is important to them in their life. It is usually a medical decision instead of a human decision. Not that the advocate team doesn’t try to make it personal.

Providing Elder Care in a Recession

Last week The Sacremento Bee published an article about the increase in elders living with their adult children, as economic difficulties put a financial strain on their ability to live independently or to afford other types of assisted living arrangements.

California trails only Hawaii in its percentage of multigenerational family households, according to AARP statistics. Beyond cultural norms, tough economic conditions often play a part in families' decisions to house or move in with their elders.

At the same time, retirement communities and upscale assisted living centers that once had long waiting lists find themselves slammed with vacancies, says the National Investment Center for the Seniors Housing & Care Industry.

The problem? Plummeting home prices have discouraged seniors from cashing out of their existing homes.

Given a choice, most seniors would prefer to continue living independently. But among health issues, economic pressures and diminishing public resources, that's not always possible.

Also last week, Paula Span wrote in the New Old Age blog about formal caregiving contracts, where a family member provides paid caregiving for an elder under a formal contract.

The elderly mother wanted to avoid a nursing home and remain in her house in Kansas City, but she needed hands-on help. The daughter, a nurse at a local hospital, was willing to shoulder responsibility for her mother’s care but couldn’t afford to lose income by substantially scaling back her work schedule.

So elder law attorney Craig Reaves drew up a care contract, specifying that the daughter would help her mother a certain number of hours each week and perform particular duties, for which her mother would pay the same hourly wage her daughter would have earned at the hospital. “The whole family agreed that this was fair,” said Mr. Reaves, immediate past president of the National Academy of Elder Law Attorneys.

July Palliative Care Grand Rounds Available

The sixth edition of Palliative Care Grand Rounds, a "monthly blog carnival" highlighting blog posts related to hospice and palliative care, is up the Palliative Care Success blog.

Open Discussions Best for End-of-Life Care

A study from Open Medicine surveys 440 patients with terminal illness and 160 family members from five Canadian hospitals. This article includes an interview with one of the researchers:

Only 18 per cent of patients and 30 per cent of families said they discussed the prognosis with their doctors,even among very sick patients with more than 50 per cent probability of death within the next few months,the study found.

This has to change, said Heyland, professor of medicine at Queen's and research director at the clinical evaluation research unit at Kingston General Hospital.

Patients with terminal illness and their families who had open and honest discussions with their doctors were more satisfied with the level of care given and had time to prepare for the impending death.

. . .

"Some are just uncomfortable talking about death and dying," Heyland said, adding that it can be time-consuming for doctors with many other patients to see.

Social workers and ethicists can help by getting the conversation going so patients and their families are better prepared for making critical decisions when they meet with a doctor, Heyland said. He warned, however, that some patients and their families don't want to have end-of-life discussions with a doctor.

In those cases, he said, having such a conversation can have the opposite effect and make matters worse - as can a poorly handled discussion.

Music Therapy Part of Hospice Care

This article talks about the role of a hospice music therapist in Minnesota.

One of music therapist Julie Szamocki's patients is an elderly woman in the later stages of Alzheimer's disease.

The woman is unable to carry on a meaningful conversation anymore. When she does speak, it rarely has any relationship to the time or place she happens to be in.

Yet her memory for music remains largely unimpaired. And so last week, without the aid of a musical instrument, Szamocki began to sing a series of old-time songs with her patient, whose agile singing voice was soon harmonizing with her own.

In the hospice community, they call it being present in the moment, and it was clear that Szamocki had reached that moment with her patient, who was soon looking down the hallway and waving people to come over and listen.

"She was so pleased with herself, because she knew she was making this beautiful music, and she knew she was being successful," said Szamocki, who joined the staff at Seasons Hospice in September as the organization's first music therapist.

The American Music Therapy Association reports that there are 250 music therapists in the country whose practice is devoted to the terminally ill.

Pet Peace of Mind Program for Hospice Patients

This USA TODAY article covers a program started a Oklahoma hospice, to help take care of the pets of hospice patients. The program has received a grant to develop and promote the program to non-profit hospices across the U.S.

The Pet Peace of Mind Program that Taylor McNac developed provides not only pet food, vet care, meds for older animals with arthritis or other chronic disease, flea and tick control, and vaccinations, but also sends volunteers to walk dogs, make runs to the groomer, or provides transportation for any other pet need.

The Acronyms of End-of-Life Care Discussed

In March, we wrote about a USA TODAY article that discussed whether changing the language health professionals use to ask about end-of-life care preferences might affect the answer of patients and their families. Specifically, whether the phrase “allow natural death” was better received than “do not resuscitate.”

Last week’s ADVANCE for LPNs (a magazine for practical nurses) featured an editorial by Martha Chambers, MSN, RN, CHPN, which discussed this distinction and included another acronym, ACT (aggressive comfort treatment.)

DNR is often viewed in a negative way. But DNR does not mean "do not treat." It does not mean "abandon the patient, nothing more can be done" and it does not mean "give up hope."

A DNR order does not give permission to end someone's life; it gives direction not to start CPR if a person dies.

An AND order recognizes the patient is dying and allows for patient autonomy, and supports aggressive symptom management with the goal of comfort for patient and family.

Establishing a palliative-care supportive treatment plan assures symptoms are anticipated, prevented and managed with a team approach that includes the patient and family. Withdrawal of life-sustaining medical treatment and unnecessary procedures allows death to occur naturally in an as comfortable and stress-free environment as possible.

No two patients or family units are the same, and developing an aggressive comfort treatment (ACT) plan is often a challenge. The nursing team only has one chance to get it right.

Most people are not afraid of dying as much as they are afraid of dying in pain, distress and with a lack of control. The goal of ACT is a peaceful end, with comfort and dignity.

In 'ACT': Taking a Positive Approach to End-of-Life Care, Patricia Murphy defines ACT as "a concept that frees yourself of the constraints of the care-oriented medical model," allowing you to "better focus on caring for the whole person."²

How a Hospice Nurse is Born

Teresa Yarbrough, a registered nurse at Alive Hospice in Nashville, talks about how her early experiences shaped her desire to become a hospice nurse.

Over twenty years later, I met a woman who was a hospice nurse. I curiously asked her to tell me what she did exactly. What did her work look like? She began to describe to me how she cared for patients during their tender transition time of dying. As I listened, I was instantaneously transported back to my Grandpa’s bedside the night I stayed with him very near the time of his death. The sacredness of that time had left an indelible imprint on my life. Just as quickly as that memory came flooding into my heart and mind, an intense desire to pursue hospice nursing as a career was birthed in me.

Also read “A Gentle Death: Five Months with Hospice”, written by the wife of a hospice patient after his death in 2002. Barbara O’Neil Ross’ husband, John, spent over five months in the care of Hospice of Cambridge in MA. Barbara’s nine-part series captures the essence of hospice care and the various roles the hospice team can play in the lives of the dying and their loved ones.

Volunteers Sewing Memories

Here is another local article (Central PA) about hospice volunteers who sew memory bears for family members of a patient who has died.

Mary Kisner has lived in the State College area almost her entire life, but her work in curriculum development at Penn State and then as a consultant in work force education has kept her on the road for much of her adult life.

Now that she’s retired, she is meeting her neighbors in Boalsburg, rediscovering her home economic skills from the 1970s and volunteering for some people she will never meet.

As a member of the local chapter of the American Sewing Guild the 62-year-old makes “memory bears” for the families of deceased hospice clients of Medi Home Health and Hospice.

The bears are stitched together with fabric that was once a favorite garment, and families are offered the bears as keepsakes, a way to grieve and remember.

Learn about how other ways hospices offer memory bears, and watch a clip from a volunteer and family recipient.