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Miracles Happen every day

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Miracles Happen every day

Hospice offers helping hands when they're needed the most

Death is certain. The timing isn’t. But it is guaranteed. One day you are going to die. So am I. Nonetheless, death—even just thoughts about death—is something most of us prefer to avoid.

And hospice is undeniably linked with death. After all, in order to be eligible for services, a person must be in a stage of disease for which medicine can no longer offer an effective treatment, and that disease must be progressive, whereby if progression continues at the current rate, death would be expected within six months to a year. “Hospice is a special concept of care designed to provide comfort and support to patients and their families when a life-limiting illness no longer responds to cure-oriented treatments,” says Hospice Foundation of America on their website.

Yet meet with hospice staff or volunteers, or talk with those who have utilized hospice services, and you discover death plays but a minor role; hospice, in practice, is all about life. 

“It is the most rewarding thing I’ve ever done,” said Darlene Coon, who has volunteered for Bonner General Hospital’s Home Health and Hospice Services for over a decade.

She came to it as do most volunteers, after having experienced it in her own life. In 1996 her husband was unexpectedly killed in a car accident, and she signed up for a grief acceptance class hospice puts on that’s open to anyone in the community. The value she got from that led her to undertake hospice training as a caregiver (eight weeks of training consisting of one three-hour night each week), and ever since she has worked in the homes of people diagnosed with terminal illness, helping them and those around them come to terms with this transition.

“Each loss is so different,” she explained, “but I realized it’s a help to have someone there who’s walked that path. It’s such a privilege that people allow you to do that.” Darlene says that true friendship and affection occurs when volunteers become involved at such an intimate time in a person’s life, and “I wouldn’t miss that caring for anything.”

Hospice is merely a term describing a type of end-life care, and can be provided from a range of organizations: in this area, there are both for-profit and non-profit hospice organizations. Bonner Community Hospice and Home Health Care, which operates under the aegis of Bonner General Hospital, is a non-profit organization funded partly through the hospital, partly through donations from those in the community, and partly by the reimbursements they receive through Medicare. Throughout the U.S. hospice care is a funded benefit through Medicare/Medicaid for those with a prognosis of six months or less of life, and recent studies show that one of four Medicare patients utilize hospice services.

Many think of hospice as a program that offers emotional support to those with terminal illness, and it does, but hospice today is an integrated program that offers much more than just emotional support; the list of hospice services covers doctors, nurses, home health aides, medical equipment and supplies, spiritual, dietary and other counseling, continuous care during crisis periods, bereavement services and trained volunteers who help in the home. Hospice isn’t supplementary support for patients who are desperately ill; hospice care actually supplants regular medical care, empowering the patient themselves (along with medical staff) to determine what treatment they want as they near the end of life. This not only improves the patient experience but, according to a 2007 Duke University study of hospice care, reduces end-of-life medical costs by an average of $2,309 per hospice beneficiary.

“Given that hospice has been widely demonstrated to improve quality of life of patients and families... the Medicare program appears to have a rare situation whereby something that improves quality of life also appears to reduce costs,” writes lead author Don H. Taylor, Jr., assistant professor of public policy at Duke’s Sanford Institute of Public Policy.

It is still, however, a small percentage of patients who choose to utilize the services of hospice; at Bonner Home Health and Hospice Services, manager Tami Feyen estimates only about 13 percent of those who die in the community were hospice patients. That is likely due, in part, to the government care reimbursement requirement that a person choosing hospice services must relinquish curative medical care for their ailment. That’s a requirement that may be eliminated in the future: The Affordable Care Act (often referred to derisively as “Obama Care”) has eliminated that requirement for children enrolled in either Medicaid or CHIPS, and creates demonstration projects to evaluate the impact of providing the same to Medicare patients. (Unfortunately, our neighbors in the state of Washington have decided that, as of January 1, all hospice benefits provided under Medicaid will be discontinued.)

Choosing hospice is a difficult place for most people to reach: it’s an acknowledgement that medically, there is nothing left to be done that offers a realistic expectation of increasing life expectancy. “It’s a fearful unknown,” said Dr. Nancy Copeland-Payton. Dr. Nancy is a local Presbyterian pastor, medical doctor, and author of “The Losses of Our Lives,” a book that explores the issues of grief and loss. She muses that the “very presence of hospice” brings the reality of death to the forefront in a way we’re not always comfortable with acknowledging; she adds, however, that hospice care, “is a very quiet way of bringing us back to the natural process [of death],” and that, “when it’s time, [hospice] restores the sense of dignity... to death.”

Patients can enter hospice via two routes: either their physician recommends it, or the patient and/or family members can request services, though an individual must have a doctor’s referral before hospice services can be provided. Once accepted into the program, hospice staff meets with the patient’s medical team to discuss medical history, current symptoms and prognosis. Then a meeting is held with the patient and the patient’s support team (family and friends who will be a part of the process) to develop a plan of care; this covers everything from pain management to equipment needs to what type of emotional support will be required.

In hospice care, priorities change. Standard medical care focuses on extending life, and those treatments can sometimes sacrifice the quality of life right now in favor of a perceived or hoped-for gain in life extension. With hospice, the focus is on the full quality of life right now, regardless of whether a particular treatment or response will extend or shorten the time frame of that life.

Surprisingly often, this focus ends up extending life; for example, a study published in the Journal of Pain and Symptom Management (Sept. 2004) stated, “Furthermore, for certain well-defined terminally ill populations, among the patients who died, patients who choose hospice care live longer on average than similar patients who do not choose hospice care.”

“It’s all driven by the client,” explained Tami Feyen, who looks at hospice care as an immensely empowering process for patients who might be seen to have little power at all. “It’s all about what a client wants to accomplish in the time they have left; it’s about living their life.”

What someone in hospice might want to accomplish varies as widely as the people themselves. “Someone might want to take one last boat ride on Lake Pend Oreille,” said Tami. “Or they might want to make amends with family members they’re estranged from.” There might be legal or financial issues to be resolved, or a garden to plant, or family members out of the area the person wants to reconnect with. “Sometimes people want to do a life review; talk about what they’ve achieved in their life. We had one client, a lifelong native, who even wrote a book. We do whatever we can to help people accomplish their goals,” Tami said, and mentioned that the book written is soon to be published.

Surveys have shown the top priorities of patients with a terminal illness are not necessarily medical issues, but instead focus on quality of life issues like being with family, having the touch of others, being mentally aware, and not becoming a burden to others.

There is, of course, much more hospice provides for clients. There are trained nurses who help clients make medication decisions (how much painkiller?), and volunteers who arrange for palliative equipment (hospital beds, walkers and the like), who sit with the patient so that caregivers can run errands, who run interference with well-meaning family and friends so that the client’s wishes are honored. But again and again, be it hospice staff or volunteer, the conversation keeps coming back around to that one-on-one connection with the client themselves. 

“Sometimes I’m just an ear to listen,” said Darlene. “After all, you’re a new audience—you’ve never heard their stories before. This is such a nice way to give back to your community, by giving your time to someone like this.”

It’s an experience that will change you—in a positive way—forever. “We see miracles happen every day,” Tami said with a smile.

Sometimes they are true miracles—events with no explanation—like patients who seem to be able to determine the time they will die, holding on until the time is right for them to go. Sometimes the miracle extends to recovery. “We call them graduates,” said Susan Benesh, the volunteer and bereavement coordinator for Bonner Community Hospice. Mostly, however, they are miracles of love. “Seeing families offer such loving care,” Susan offered. “It really is a miracle.”

Susan oversees about 50 regular volunteers in their hospice program, though she wouldn’t mind getting another 25 or 30 in the program. Someone who wants to volunteer must go through an application process that includes background checks, TB testing, reference checks, training and a post-training evaluation. “We have huge longevity in our volunteers,” said Tami, “and most of them come to us because, many times, hospice has touched their lives in some way.”

Although Medicare/Medicaid provides reimbursement for hospice care, that reimbursement averages only about $135 a day. A ‘typical’ patient may require, for example, a hospital bed to enable them to sleep sitting up; a morphine pump for controlling pain; medicines to cope with symptoms common to end of life (for example, dry mouth) along with medicines specific to their own illness. In addition, our local non-profit hospice provides bereavement support to the family and friends of a terminally ill patient, support that’s available up to a year after the patient dies. This bereavement support, while required of non-profit hospice programs, is not funded at all. It’s easy to see why a non-profit hospice must also rely on donations in order to provide their services.

Surprisingly, however, Bonner Home Health and Hospice Services has no major corporate sponsorship. Its largest, regular donation comes from the Holly Eve Foundation, which each November puts on a live and silent auction, punctuated by a fashion show and complimentary hors d’oeuvres, to raise money for hospice along with other programs in the community. The majority of the donations the BGH hospice receives come from those who have been touched in some way by the services hospice provides.

“We would love to get more donations,”  Tami acknowledged, and mentioned that several of their volunteers actually spend their time with hospice actively seeking donations. “What we’d really like,” she added, “is for people to come to us sooner.” Although hospice services are available to those with a diagnosis of six months to one year of remaining life currently, nationwide, the average length of time on hospice is just 14 to 20 days. “Unfortunately,” said Tami, “hospice tends to be viewed as giving up”

And that’s not just by patients; doctors themselves may be reluctant to refer a patient to hospice services. Not only do doctors tend to overestimate patient survival times, they are often reluctant to acknowledge that there may be nothing further they can do. After all, medicine is not an exact science; what if they’re wrong?

“People hear hospice and think death,” said Tami. “But that’s not the case. People should hear hospice and think life.”

Bonner General Hospital’s Home Health and Hospice Services holds two fundraisers each year: an annual rose sale (already over by press time) and the Memorial Tree of Lights, to be held December 5 at 4 pm this year. Make a donation to hospice (of any amount) and a light will be added to the tree in memory of your loved one. The ceremony takes place at four locations simultaneously: the Brown House in Sandpoint just north of Bonner General Hospital, the Free Methodist Church in Bonners Ferry, the Priest River Library and the Catholic Church in Priest Lake.

 

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When someone you care about is diagnosed as terminally ill:

When you hear that someone you know is dying, it’s typical to want to do something to help, or to ‘rush to the bedside.’ Remember to ask, first. Patients and families have different needs. Don’t take it personally if they don’t want you to stop by—energy levels can be limited. Simply offer your help; if it’s needed, the family will let you know.

Don’t be afraid. Often times we find ourselves avoiding someone who has a terminal diagnosis because “we don’t know what to say.” Our role at this time is simply to listen: the patient or the family will let you know what they want you to say, and it might be nothing at all.

Avoid offering advice. We all have personal opinions, ranging from diet to medical options to how to live our everyday life and again arising out of our desire to help, it can be hard to refrain from sharing those opinions. But wait. If your opinion is wanted, it will be asked for. Accept the choices a patient makes, even if they’re choices you believe you would not make yourself.  This is their journey, not yours.

Educate yourself. Whether the patient and/or their family reaches out to you or not, you will be better able to cope if you’ve taken the time to learn about what this experience is like. Stop and visit your local hospice center for tips on understanding the issues that face those who must live with a diagnosis of terminal illness.

 

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Although November is national hospice month, this story wasn’t written with that in mind. My good friend (and the best godmother to ever exist) Susan d’Aoust, in one of her last requests to me before she died, asked that I write this story. She wanted me to inform people of the services that hospice provides and to encourage our community to support this program. Susan was a tireless supporter of programs to benefit the community, and I was not surprised that even when facing death herself, she was continuing to focus on improving ours. If you are a local business, please consider adding a donation to hospice to your regular budget for charitable giving. If you’re a resident, please consider supporting this program that, ultimately, can be of benefit to each and every one of us who will eventually die. Tell them that Susan sent you.

You can reach Bonner General’s Home Health and Hospice Services at 208-265-1007 or simply mail a check to PO Box 1448, Sandpoint, ID 83864.

Susan Saxon d'Aoust

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Landon Otis

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death, Bonner County, hospice, Bonner General Home Health and Hospice Services, Darlene Coon, Tami Feyen, Dr. Nancy Copeland-Payton, Susan Benesh, Susan dAoust

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