End-of-Life Choice, Palliative Care and Counseling

Hospice: a Caregiving Experienceby Sonja

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by Miranda Klingenberg
Pilot Tribune
January 14, 2013

It takes two people to bring someone into this world, but how many does it take to help someone leave it?

If the death is one that can be anticipated or planned for, he answer might surprise you.

Hospice is a palliative form of care designed to support a patient and his or her family through the process of dying. And it requires a full team of professionals and sometimes volunteers to ensure that the patient’s physical, emotional, and spiritual needs are fully addressed. The hospice team administers everything from massage therapy and pharmacological management to bereavement and spiritual counseling. The team recognizes the strengths of each member and works together to provide care and support for patients and their families.

Sometimes people come with reluctance. Many do not want to hear ‘hospice,’ but the very word helps people come to terms with what lies ahead. Janel Kaufman, an RN with the Buena Vista Regional Medical Center hospice team said “You’re providing and coordinating care so that they as a family unit can cope with what they need to cope with.”

It takes a special kind of person to devote their lives to the care of those preparing to transition from this world to the next. Caregivers must be compassionate and comfortable with death, but they must also know their own boundaries. One must accept that death is a natural process. Kaufman said, “I had one of my relatives tell me, ‘Remember, if you do this, that they are not your family,’ which is pretty good advice because sometimes people would like you to move in with them and you need to remember it’s not your job to fix things.”

Tricia McGregor, the volunteer and bereavement coordinator at BVRMC Hospice said, “The toll of dealing with death and the emotions day in and day out can wear on somebody. I think the people who struggle more are those who struggle with boundaries. You really have to separate yourself. It’s hard, particularly caring for people who you know personally. Where does your boundary line as a professional stop and you say no? Sometimes you have to just say no or find someone else to fill in for you.” She added, “We can’t be everything for everyone; you can’t let yourself become consumed by it.”

So why would someone choose this profession? “I have seen enough cases where we’ve made a difference that I just know that it’s the right thing to do,” said McGregor. “It’s very rewarding most of the time.”

People can be known to display incredible strength in caring and coping with the impending death of their loved ones. Hospice caregivers are exposed to these feats of strength firsthand and claim that that in itself can be rewarding. When families come together and care for their loved ones and they’ve been prepared with the tools to do what they need to do with their family, it is a satisfying feeling. Yet the greatest reward of all, they say, is something they referred to as a “peaceful death.” This phenomenon occurs when the family has come together and supports one another. The patient is peaceful and feels ready to go. Kaufman said, “Being part of that is a beautiful thing.”

Wende Douglas is the Hospice Spiritual Director for Buena Vista Regional Medical Center Hospice. Douglas is responsible for seeing that patients’ spiritual needs are being met. Although many in the area consider themselves of the Christian faith, Wende caters to all spiritual preferences or lack thereof.

Douglas “sometimes people have strong concerns about their loved ones and sometimes people have a very strong faith of their own with very specific ideas about how to get to Heaven and they might be worried about a loved one making it into Heaven. If that’s the case, I recommend that we get in touch with their own pastor or priest and have them provide further spiritual care.”

Douglas is open to theological discussions but says most people are more worried about how they’ll pass away. She encourages people to figure out their beliefs before they reach that point in their lives. “People with questions and doubts tend to have more difficulty dying. If you don’t have a hope or a sense that your life has had purpose, it can be a very dark experience.”

Are there people I need to forgive? Has my life had meaning and purpose? Are there unresolved things I need to talk about? Why do we suffer? Why is this happening to me? These are some of the many questions that people often encounter when in the last steps of life.

McGregor claims that a large portion of her job is to listen and provide a presence when she’s with patients. She asks questions and lets them guide the conversations and go where they need to go. “People ask me if it’s hard and I say yes, yes it is hard. We do cry. We’ve cried and laughed along with families. For me, some of the relationships that I have developed with people have taught me so much. I have learned how to live from people who are dying.”

The members of the team do not know when their patients will pass, only the patient’s condition so that they may improve the quality of life for the time left. Kaufman explained, “They want to know what it will be like. A gentleman once asked if I knew what it will be like and I said ‘I can’t, I’ve never walked that journey before.’ It’s their own journey and honestly as long as I’ve done hospice, I still don’t have any idea what it’s like.”