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The Family Caregiver’s Role in Hospice

Experts share how to best support loved ones during their final days

spinner image older woman holds hands of her caregiver
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I’ve had the incredible honor of being present for two beautiful deaths. 

In 2013 I was in Michigan when a hospice team came to the home for my mother-in-law, Frannie Woodruff. We were all uncertain of what to do and frightened of what dying would look like. The hospice team helped us accept our roles and feel comfortable with each stage as she advanced. I will always have the memory of holding and rubbing her feet as she took her last breath, her sons surrounding her on the very same bed in which they had been conceived.  

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When my own father passed away, two years later, slowly erased by Alzheimer’s disease, my sisters and I were present in the nursing home as he took his last breath. I felt the energy in the room shift and shimmer for a moment as I pictured his soul leaving his body, heading toward the final, unknowable mystery in life. 

The hospice teams in those situations were navigators and teachers. They interpreted and instructed us about what was to come, helped to normalize the process and gave each of us roles throughout the journey. Without their guidance and patience (every family must ask some version of the same thing), our experiences might have been much more clinical and laced with anxiety. Instead, we felt engaged and animated as they helped us to understand the ways in which dying is a completion of the circle of life, not something to prevent or prolong.

Death is inevitable, and so we need to honor the fact that loved ones will get old, talk comfortably about the end of life, acknowledge that it’s happening and stop fighting the process. One of the overarching themes that came up while researching this piece was that “people need permission to die” from their families. The dying person needs to feel that their family is supporting their death, and that’s where and how hospice comes in. Hospice helps families and caregivers get into the mindset that “this is happening.” The questions then become: How can we give you the best possible death? What are you afraid of? What life issue is undone, and how can we help you with that?    

How hospice differs from palliative care

There is often an understandable confusion between palliative care and hospice care. Palliative care is for people with a life-threatening illness. Even if they are in decline, individuals under this type of care can pursue treatment. Hospice patients, though, are terminal, which means they have six months or less to live. The goal of a hospice care team is to do everything in their means to guide the person to a peaceful end of life with dignity and respect on the individual's terms.

Dorothy Baliban, 63, of Bronxville, New York, is the support/intake nurse at Jansen Hospice & Palliative Care in Scarsdale, New York. She has focused on hospice nursing for the past 10 of her 40-plus years as a nurse. A key part of Baliban’s job is to ensure that people meet hospice criteria. She then begins the end-of-life discussion with the family. “The dying process is physically, emotionally and spiritually intimate, not only for the patient but for the family, as well. One of the first things I establish is who the main caregiver[s] will be for this patient in the home,” Baliban says. “I need to make sure the family understands that even though we’re coming into their home, our job is to work with and support the family and not take over as the 24-hour caregiver.” 

“Many aspects of end of life can be hard for families to witness,” Baliban observes. “Caregivers need to cope emotionally with their own responses to death, which can range from feelings of fear, guilt and anger to sadness and depression.” Through it all, caregivers must continue to assist with the activities of daily living, such as feeding, bathing, dressing, toileting and administering medications. “A large part of the job is educating people,” she adds. “As patients enter the end-of-life phase, families must watch for various symptoms, such as a progression from losing the ability to communicate, eat and move, as pain and symptoms increase. It’s also our job to ascertain the family members’ capability of making these observations and make sure they know they can rely on our assistance if difficulties arise. Ultimately, our job is to meet the patients and families where they are in their processes.”

Normalizing the dying process

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.”

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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.”

Tips for Family Caregivers

  • Have a conversation about the dying person’s wishes before the individual gets to the end stage of life.
  • Trying to meet all the needs of your loved one during the dying process is almost impossible. Get comfortable with doing the best you can — there is no perfect.
  • Be realistic about your own capacity to care. Are you going to be able to change adult briefs, give oxygen or administer medications topically, orally or anally?  
  • Think about ways to provide dignity. One caregiver found a Japanese screen to put around her mother’s hospital bed in the living room, to provide both privacy and beauty. 
  • As a caregiver, you must remember to take care of yourself, even through small acts during the dying process. Step out of the room and walk around the block. 
  • Ask for help! Being a caregiver to a dying loved one is overwhelming on every level.
Tips for Starting a Conversation About End-of-Life Care

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.

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