Intimacy in Hospice: How to Talk with Patients and Families

When a patient enters hospice care, often among the least-thought-about issues is a profound one: intimacy—both for patients and their spouses as well as the healthcare professionals attending to their needs.

“This is a part of everybody’s life, it’s part of who we are. There are physical aspects, spiritual aspects, and emotional aspects. We do no one a favor by ignoring questions about intimacy or not addressing them if raised,” said Sherri Bickley, LMSW. M.Th., who leads support services for Crossroads Hospice.

Communication is critical

DeAnna Looper, RN , CHPN, CHPCA, Crossroads Hospice’s senior vice president of clinical operations, agreed that communication is the critical component for couples and practitioners dealing with the sometimes uncomfortable topics of sex and intimacy.

While illness itself is a barrier for couples, so is its treatment, whether it is catheters, oxygen tanks, or feeding tubes, said Looper, a registered nurse who is also certified in hospice and palliative care and is a certified hospice and palliative care administrator. “They become afraid. They’re afraid they are going to hurt the loved one or break a piece of equipment.”

Families and patients want to be close

Family members are unsure if their loved ones want to be touched or hugged and are uncomfortable bringing it up with them or their hospice care providers, Looper said.  “Patients have the same feelings about wanting intimacy as they did before their illness. We give permission to family members to be together and to touch. It means a lot to the patient.”

In her position, Bickley travels to the company’s 11 sites, working with social workers, bereavement counselors, volunteer managers and chaplains. “The role of intimacy gets lost on aging and terminally ill populations,” Bickley said.

How should a clinician handle the questions?

It’s rare, Bickley said, that a hospice professional can’t handle the topic of intimacy. In those instances, she said, the clinician needs to excuse him or herself if they are uncomfortable discussing it with their patients and needs to ensure another clinician who is comfortable with these discussions is assigned to work with the patient and family.

Her advice for the practitioner is simple: education.  “More training, workshops, supervisory group exploration of where the discomfort comes from. We’re scared of what we don’t know,” she said.

Looper said patients or their spouses may be embarrassed to discuss intimacy directly so hospice workers have to be attuned to indirect comments such as, “I’m not as connected as we used to be” or “We’ve lost something.”

“I’ll tell them, ‘Crawl into bed and snuggle, hold their hand stroke their foreheads. Get that connection back even if for a few moments.’ I encourage that.” 

Looper recalled one patient with cancer, a strong, stoic type whose wife felt like he was shutting her out—which he was. He was always the caretaker, the provider, and didn’t know how to adjust to his new role as a patient. He didn’t feel like his wife saw him as the man he used to be. 

Looper suggested that each evening the couple watch television together, hold hands and put their arms around each other.

When she asked how it was working, both smiled and said how they looked forward to their television time all day long.

“He told me, ‘I know I’m still her husband and I’m still important to her and she loves me as much as she ever did.’

“A patient on hospice has the same feelings about intimacy,” Looper said. “The permission to be together and touch means a lot to a patient.”

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