Nurse practitioner proposes local volunteer hospice care

(Phoenix Log) Ellen O’ Brien is hoping to fill a need that she feels is sorely lacking in Seward — hospice care. O’Brien, of Moose Pass, is an advanced registered nurse practitioner who works at Providence Seward Medical & Care Center. She has lived and practiced in the area for 25 years and has seen the plight of those nearing death’s door being cared for at home, often without adequate or appropriate help. She has seen them leave for professional hospice care in Anchorage or elsewhere, away from their homes, family and friends. With hospice services provided locally, in their own home, these scenarios can be avoided, she said.

“Seward has lots of people who find themselves with an injury, disease or other diagnosis of terminal illness and we have nothing in community to help those people other than family and friends,” said O’Brien. “Most people want to live and die at home. The hospice principle is to help them live well until they die.”

Traditional hospices have many demands and requirements that couldn’t easily be met in a town with the population base the size of Seward’s. Those requirements include offering on-site palliative (pain and comfort) care physicians, nurses, chaplains, nutritionists, and 24-hour services.

But O’Brien has discovered the concept of volunteer home hospice, which has fewer demands and requirements, wherein a cadre of trained volunteers can provide many of the nonprofessional services that hospice provides in client’s own homes.

It is already being done across Alaska in places such as Anchorage, Haines, Sitka and Soldotna. Kodiak is in the process of getting one going after two years of work, said O’Brien. All have been extremely helpful in providing her with the information and guidance needed about getting hospice started here.

In this type of hospice, trained volunteers help clients with chores, errands and take them to appointments. They offer emotional and spiritual support, and can also help gathering photos and recording stories that clients may wish to share with their children and grandchildren. Hospice volunteers also support the spouse or family by providing respite care, while also offering the families emotional and spiritual support during the client’s dying process, and bereavement support for up to a year following the person’s death. Sometimes volunteer chaplains help out, too. While they receive home hospice, clients still can get the palliative care they need for managing their pain and suffering from their regular health care providers.

People involved in local organization with whom she has spoken have positively received the idea — including the Seward Senior Center, and Community Health Center boards, said O’Brien. Some people have privately told her that they would be willing to volunteer, and she has had to turn down offers of money as an organization has yet to be established.

Now, she is looking for willing board members, and an umbrella organization with nonprofit status that would be willing to oversee a volunteer hospice for grant purposes. Generally, a minimum staff of one, or possibly two people are needed to get one going, she said.

“We all 100 percent see the need in the community. It’s like dying with dignity, and hospice is a big player in that,” said Senior Center Director Dana Paperman. “It’s kind of been a missing link in the community for a long time especially when Providence Home Health Care went away.” Paperman, and her mother who lived Outside, were grateful to receive such services.

“From my own personal experience my mother had hospice and also long term care, and it really provided encouragement to the family at that time of understanding the process and what to expect, and accepting it.” The board will consider O’Brien’s proposal during its annual strategic planning process in the spring.

“If we can get it together I think it would be a benefit for our community,” agreed Marianna Keil, a board member of Seward Community Health Center. “It’s a beautiful mission.”

Keil’s mother recently died in Washington state and hospice care helped her and the family cope, she said. “It’s very special for both comfort for pain, and for family members that are going through the process,” she said, although it takes a very special, caring person to volunteer. However, her board’s main focus currently is applying to obtain federally qualified health center (FQHC), or look-alike status for Seward, said Keil. Once it gets that status, the board might be in a position consider something like including a volunteer hospice program, she said.

In preparation, O’Brien also took volunteer hospice training in Anchorage and learned many things she did not realize about caring for the dying and their families — even with her 30-year nursing background. She learned it is not helpful, or advisable for example to tell the newly bereaved how very sorry you are. “In hospice training we were told it is not about you, it is about them. Whether you are sorry or not is not the issue, it’s how they are doing.”

Hospices have a great reputation, and it is not too difficult to obtain funding for them, she added. They also save in health care costs overall, as people with terminal diagnoses decide to transition from costly, often unhelpful life-prolonging treatments to less costly palliative care.