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Quality of life at the end of life

Tackling End Of Life Care And Sex: Part 2


The seriously ill shouldn’t fear asking their doctors about sex or shy away from broaching the topic with intimate partners.

To encourage frank discussion about the taboo, Shirley Otis-Green, clinical director of consulting services for Coalition for Compassionate Care of California, is lecturing palliative care physicians, geriatricians and nurses. She is calling on providers to help address the “elephant in the waiting room.”

“Quality of life matters, and it matters when a person is well and certainly matters when a person is ill,” she said. “Being able to address things that have mattered to a person, whether that includes sexual expression or sexual identity, is really important for us.”

Otis-Green spoke with Life Matters Media about sex and end of life care.

Why address sex and intimacy issues of seriously ill and aged people?

Shirley Otis-Green

Shirley Otis-Green

It really comes from my clinical work – sitting at the bedside of folks who were seriously ill.

Most of the people I worked with had cancer, and many of them did really well for long periods of time. Some were facing end of life issues. Regardless of where they were in the continuum – doing really well with a fairly minor situation or with a major life-altering situation – there were areas that fell through the gaps.

As a social worker concerned about social justice and things falling through the gaps, I tried to develop some expertise in those areas. Spiritual issues are in that gap area, but sexuality issues are as well. It’s not the only issue, but it’s an issue that providers feel unprepared to address.

I kind of took it upon myself to develop enough expertise to address some of the concerns that were commonly affecting people we saw. Our goal was “quality of life.”

Death is taboo, sex is taboo. How can patients broach the topic with partners, providers?

I think what normalizes discussion for all players involved is to talk about “quality of life.”

That’s the goal of person-centered care, where we try to find what matters most to a particular patient at this particular time.

If you’re the patient or the loved one, being able to say, “Doctor, I really appreciate how when we come in you talk about my medications and treatment, and that’s a priority and really important, but I want to be sure that we don’t lose site of the big picture.”

Being able to say the things that matter most. Being able to say I want the time I have left to be the highest quality time. For most folks, it will be kind of a gingerly addressed conversation and maybe with some euphemisms, but presumably health providers are going to pick up on those concerns.

Still, the more direct or clear that a patient or family member can be the better. We don’t read minds.

Remind health care providers that there’s been a real change  –your husband may have changed from seeing you as a sexual partner to someone he provides care for.

What about people facing amputations, mastectomy or low self-esteem? They may not view themselves as “sexy” anymore.

That’s why I like the phrase: “Sex isn’t just for the sexy.”

It’s how we are trained. People have stereotypes of what “sexy” looks like, based on images they see in magazines, in the media.

We need to remind folks that someone fell in love with them because of who they are, and that hasn’t changed.

Remind people that the core inner-part is where love is. Being able to literally say that and give permission to express their feelings.

Ill And Aged Face Barriers To Sex, Intimacy: Part 1

 – Image courtesy Pexels