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Hospice (Part 1): Writing the End of the Story

By Stephen Meador

Wilmington, NC – [Cowan] This is a photograph of my father-in-law, Arnold. He was a wonderful man. He was a timber scout, and spent his days among nature. And I think that that was reflected in his approach to life, which was, you're presented a day, you participate in that day, you do the best you can, and the next day is another opportunity, and you get up and do the same thing again.

Barbie Cowan lights up when she talks about her father-in-law, Arnold. A mother of two girls who are now grown, she says Arnold loved his young granddaughters.

[Cowan] When we would go to visit, our girls loved to jump up in Grandaddy Arnold's truck and go down to the little convenience store that was around the corner because Grandaddy Arnold was a very soft touch, and they knew that there were penny bags full of candy coming. He would take them and just let them just run up and down the aisles, and fill those penny bags of candy just as full as they could get them and come back and sit up on his lap in the recliner.

Eight years ago, Arnold Cowan got very sick. He was in intensive care for three weeks when it became clear he probably wouldn't live much longer. A doctor suggested hospice care, and though the Cowan family knew nothing about it, they agreed. But Arnold Cowan died the day after his family contacted hospice. Barbie Cowan wishes she had known about hospice care sooner than she did.

Laurie Myles is the Executive Director of the Lower Cape Fear Hospice. She says some people don't tap into hospice because of quickly deteriorating medical conditions, or because they're holding out for some miracle cure. But more often than not, they simply don't understand what hospice is all about.

[Myles] When you talk to people after somebody has had hospice care, what many of them say is that I wish I had known about hospice care sooner, or I wish I had put my loved one into hospice care sooner because they just don't realize...They understand the physical care but I think they just can't fathom the emotional support and the spiritual care and all of those sorts of things.

Myles says the goals of hospice are to allow a safe and comfortable death, and to help people die where they want to die. Hospice care may be provided at home, in a hospital or a nursing home, or in a dedicated hospice facility. Under the philosophy of hospice, emotional and spiritual support is just as important as any physical care that's provided. That support is not only for the patient, but also for the patient's family. It's a team effort that includes not only doctors and nurses, but also counselors, chaplains, social workers, and volunteers.

[Myles] People will say, "You know I had no idea what hospice would take off of me, you know I felt like I had all these burdens, I had to make all these decisions, I had to figure out what to do next, and they just kind of came in and took over and let me just be the caregiver."

Hospice workers help with the end of life journey in many ways. They can map out the progression of the disease and help ensure patients meet any end of life goals they might have, like finding closure with a family member or a friend. Hospice can also assist with financial or legal matters, like advanced medical directives, often called living wills. One big benefit hospice workers provide is helping to start the sometimes difficult conversations about an approaching death.

[Myles] I think that because their goals are to help both the family and the patient, that that gives them that comfort level that if the families and the patients aren't able to talk to one another, that they can be that go-between and maybe at least break the ice for that conversation.

Although most people think of cancer when they think of hospice, nearly half of all hospice patients suffer from other terminal diseases. As these diseases progress, pain management can become an important part of hospice care. Hospice protocol dictates the patient should be as comfortable as possible with the least amount of medication, while keeping the patient as alert as possible. Medical staff are experts in pain management, and are constantly reassessing each patient's condition.

Hospice also provides both anticipatory and bereavement counseling services. Hospice counselors try to assess the struggles each family member may be having and tailor their counseling accordingly. They usually track family members for up to a year after a patient's death.

The hospice experience can be physically and emotionally draining, but it can also be extremely fulfilling. This is true for both family members and hospice workers. Unlike a hospital, where medical staff are focused on acute care needs, hospice staff have more time to talk, to interact, to sit and hold the hand of a patient or a family member. Laurie Myles, who started her career as a nurse, says many people get into the medical field because they want to provide the sort of caregiving that hospice allows.

[Myles] The staff inevitably will say that it is the most rewarding thing they have ever done because they're allowed into a family situation where they're very vulnerable, and they make such a difference.

Many family members and friends are so moved by their hospice experience that they become hospice volunteers. No other part of the health care system relies on volunteers as much as hospice does. They serve many roles, including running errands, reading to patients, or simply giving family members a respite from their caregiving responsibilities.

Barbie Cowan became a hospice volunteer after the death of her father-in-law, Arnold. Being a volunteer has allowed her to help others struggling with an approaching death, and also better manage her mother-in-law's end of life journey two years ago. She says hospice can redefine the dying process from something scary and unpredictable to something meaningful that everyone involved can help guide in their own way.

[Cowan] It is a part of life. It is going to happen, and I think as we embrace it we can learn to write the script, we can write the end of the story the way that we want to see it played out, so that it's not left to people that we don't know. It's not left to institutional buildings with people that are making the decisions for us and on our behalf, but through which we have nothing to say.

For WHQR Public Radio, I'm Steve Meador.