The Family Caregiver’s Role in Hospice

Rebecca Boucher, 61, of Salt Point, New York, is a volunteer hospice person or death doula — a term that is getting more traction in the field. A doula’s role is to normalize death for the patient and family and to be the objective person in the room, without baggage or judgment, who intuitively understands the right time to leave or speak up. Doulas can help the patient articulate how they want their death to go and, without being intrusive, work to ensure that the dying person’s needs and wishes are heard. Death doulas are active listeners, sometimes mirroring or even interpreting what everyone in the room is saying. They use phrases like, “I’m hearing that you are ready to go.…”  

“There’s a natural sense of helplessness that family members experience when they are about to lose a loved one,” Boucher says. “What I love about this work is being able to help the family through the process in some small way.”

Boucher stresses that it’s important for dying people to articulate how they want to die. This gives the people around them something to do so that they feel less helpless. And that can take many different forms. 

“Giving a task or role to the loved ones around the dying person allows them to feel like they are fulfilling the loved ones wishes,” Boucher explains. “Some people want a book read to them, and anyone who comes into the room can read a chapter, which gives them a role beyond sitting by a bedside and holding a hand.”

One of Boucher’s suggestions is for the terminally ill to have a journal handy that friends and family can sign; it could include provocative and personal questions they’d like them to ask, such as, “When was the last time I made you laugh? Or "What are some of the memories you will have of me after I’m gone?"

“Most of us don’t get to see our eulogies before we die,” Boucher notes. “To have those kinds of memories and thoughts delivered to the person while they are still present can be very comforting.” 

Listening to the dying person’s wishes

Beth Baine, 65, of Rye, New York, is a retired board-certified health care chaplain who has experience with palliative care in New York hospitals. She acknowledges that the idea of hospice is often hard for people to accommodate because it signifies “the end.” “The hospice philosophy is that you matter until the end of your life,” Baine says. “Being present as people have to make decisions at the end of life can be both heartbreaking and amazing to witness.”

Her first step is to find out what is important to the patient. “I ask people, What makes your heart sing? What would you like to do with the time remaining? How would you be most comfortable?”

What’s the biggest mistake caregivers and families make? Understandably, families want to fix everything. “There’s an imperative in our medical culture to continue treating disease and to keep reaching for a cure,” Baine says. 

Everyone I interviewed had a story about how caregivers try to prolong life for the dying person. As soon as the family member walked out of the room, the patient would turn to the hospice volunteer and say some version of: “My son wants me to do more chemo, and I’m so tired. I just don’t want to do it anymore.”

The journey with hospice is about helping families get past the acceptance that a loved one is dying so that they can begin to understand what is most important for them in the time that is left. “Caregivers need to really listen to their loved ones, to help them stay comfortable and pain free, both physically and emotionally,” Baine emphasizes.

Don’t make it about you

A dying loved one can be especially difficult on siblings, who might have different opinions or revisit past hurts. “This is not the time for those stressors to show,” says Baine, who understands how grief can cause people to focus on the small things, rather than deal with the big, unavoidable one. She has seen siblings bicker over things like flowers, lighting or where the hospital bed should be positioned in the home. “Try to talk about this ahead of time and understand wishes, so that you aren’t making decisions in the moment and having disagreements in front of the dying person.”

One of the most common mistakes we make as caregivers is to let our own anxiety intrude during the end of life. Sometimes the dying person’s wishes and desires are in opposition to what the caregiver wants for their loved one or believes would be best. “We need to honor what the patient needs during their last days and take our own biases and opinions out of the process,” Baine says. She recalls a mother who no longer wanted to see visitors as she began the stages of dying; yet some of the siblings felt she should be getting outside and seeing people, as she had always done. The effort it took for the dying woman to try to meet her children’s wishes took her energy and strength, complicating the process of letting go. 

As a death doula, Boucher tries to focus people on what they always enjoyed and incorporate it at the end of life. She’s witnessed some very personal and touching actions when the dying person asks friends to take an object, book or artwork home with them. Sometimes dying people want to pass along valued possessions while they are present, but it may be too painful for the family to begin to deconstruct their lives before they’re gone. 

“Families need to listen to their loved ones' wishes, as these kinds of acts can provide so much comfort and solace to the dying person,” Boucher says. “It’s important for some people to know their cherished objects are with people who will enjoy them.”

Tying up loose ends

Some people want to write their own obituaries, and that can be a helpful exercise for them to review a life well lived. Boucher, who is also a writer, describes working with a woman who had ALS (Lou Gehrig's disease) and was unable to speak. “She told me about her life through notes and then showed me her obituary. She was the kind of person who didn’t want to toot her own horn, so I asked her permission to add some of the stories she had shared, and when I read it back to her, she was clapping.” 

Some patients want to wear a particular article of clothing before they die; others want to see a place from their childhood or sew up a loose end in a relationship. Part of the work of being by the bedside in hospice is to allow the patients to think about the most meaningful parts of their life and help ensure that those sentiments are expressed and appreciated by the loved ones around them. Other stories I heard were equally touching: helping a dying woman write a letter to her son, working with a singer-songwriter to create a final song. 

“There is both a beauty and a need to put our lives in perspective so that we don’t feel we are defined just by what happens at the very end,” Boucher explains. “It’s critical to talk to the person who is dying and find out how they envision their death and the very end. Some people invite family; others want only a few people present. Others want music; some want the detritus of their disease (wheelchairs, commodes, walkers, etcetera) to be taken away. So much of this is about dignity in dying.”

In Boucher’s experience, most people die the way they lived. “If they were private people, they were still that same person at the end,” she says. “If they were a social creature, they might have tons of visitors right up to the end. Our personalities don’t change at the end of life.”

Lee Woodruff is a caregiver, speaker and author. She and her husband, Bob, cofounded the Bob Woodruff Foundation, which assists injured service members and their families. Follow her on Twitter and Instagram.