Someone once said, “social work is the art of listening and the science of hope.”
Bethesda Hospice Care social workers Allison Givens and Laurel Willis have more than 30 years of experience working with hospice patients between them. They have listened and provided hope that the end of their lives will be filled with as much care, comfort, and meaning as possible.
In addition, they both understand that a friend or relative may find a conversation with a hospice patient intimidating and awkward. What does one say? What does one not say?
Here are some ideas about having conversations with a loved one or friend in hospice care.
Let the Hospice Patient Take the Lead
Allison and Laurel agree that the hospice patient should set the course and tone of the conversation. “You always want their perspective of what they are thinking and feeling,” says Laurel. Allison describes it as “letting the hospice patient write the narrative.”
Approach the visit with the mindset of listening, but be aware that some hospice patients may be reluctant or unable to talk. Reasons for this include a lack of energy, concern that they have become a burden, or denial of their condition. Also, if they have never been a talkative person, they should not be expected to suddenly become verbal.
The Dreaded Silence
“A moment of silence seems to go on for hours,” says Allison. “We feel pressure to fill it with something, but there are other ways to communicate, like reaching out to touch the hospice patient’s hand or arm and to simply say ‘it’s good to be here with you.’”
Laurel talks about providing a therapeutic presence—just being with someone in his or her time of need. “You provide a caring presence and give them time to talk or not talk,” she says.
Both agree that the conversation cannot be forced. Instead, watch TV together, listen to music, or look at family photos. You might be enjoying a conversation before you know it.
If things seem uncomfortably quiet, think about things that you always have had in common. After greeting them, ask about a recipe of theirs you have always admired, or talk about some unique aspect of their life. “Talk to them as you would normally and see where the conversation goes,” Allison says.
The direction may surprise you.
Laurel remembers a woman in hospice care who shared her desire to have a steak dinner with wine, so Laurel arranged it for her. Allison recalls a woman who loved peach ice cream and talked about it all the time. “She even had special peach ice cream cups, so I bought her some peach ice cream and she scooped it into her special cups and proceeded to talk about every memory she had that was associated with peach ice cream.”
Life History and Resolutions
Social workers know that asking someone about their past may serve as the spark to a good discussion. “Ask them what was the happiest moment in their life, or what they were like as a child,” suggests Laurel. “You can even ask about regrets they may have. We make the questions open-ended because we want to know what they are feeling and thinking,”
As a social worker, Laurel say she gives the hospice patient the opportunity to reflect on his or her life and see if they have any last wishes or unresolved issues.
For example, one of Allison’s hospice patients was a quilter, as is Allison. The woman was concerned that she would not be able to finish her last quilt. “It was important to her that she not die with any unfinished projects,” Allison says. “So she told her family to give the quilt to me so that I could finish it. It was an honor for me to complete it.”
What Not to Say to Someone in Hospice
The list of what not to say to a hospice patient is far shorter than the list of things you can and should say.
Don’t hold false hope that they will recover. According to Allison, some people are convinced that anything can be cured with a positive attitude. “So if I’m a hospice patient and my cancer has not been cured, does that mean I’m a failure?” she asks. “Of course it doesn’t.”
Don’t force them to resolve all their conflicts and personal problems or try to change their beliefs about death. Most people in hospice know they are dying and they understand that no one can change that. They are not asking family, friends, or even medical professionals to solve the problem of dying. They are asking them to join them in making the most of the life they have left.
Laurel cautions that even before hospice becomes a possibility, family members should not promise Mom or Dad they will never place them in a skilled nursing community. “You can tell them that you will do your best to care for them at home if that is what they wish, but you are setting yourself up for a lot of guilt if you make a promise you ultimately can’t keep,” she says.
Other Things You Can Say
Allison says it is quite acceptable to say that you hate what is happening to the hospice patient and that you will miss them. Also words like “forgive me” or “I forgive you,” provide an important emotional healing for the patient and the family. “Thank you for what you have meant to me,” and “I love you” are also treasured by hospice patients.
“I tell people when we are getting near the end to never leave a visit without sharing what is in their heart,” says Allison.
For more information, Allison recommends the book The Four Things That Matter Most, by Dr. Ira Byock.
Additionally, Bethesda offers resources and support to family members and loved ones of those in hospice care. Contact us to learn more about Bethesda’s Hospice Care services and our monthly grief support groups.