Beyond “The Sessions”: Intimacy at end of life

I did a little follow-up interview with the wonderful people at Life Matters Media.

November 16, 2012
Beyond “The Sessions”: Intimacy at end of life
Dr. Richard Wagner

Dr. Richard Wagner, a Seattle based clinical sexologist, spoke with Life Matters Media this week about the many positive effects physical intimacy may have on the terminally ill. As the critically acclaimed film The Sessions has brought this topic to the forefront, it has left in its wake many issues in which to delve deeper. Wagner, a former Roman Catholic priest, is the author of “The Amateur’s Guide to Death and Dying: Enhancing the End of Life.” He has practiced sex therapy and relationship counseling for more than three decades.

You have a degree in theology from the Jesuit School at Berkeley, and you’re a former priest. How did you get involved with end of life and intimacy?

I was a Catholic priest for 20 years. While that wasn’t a particularly happy association, I’m the only Catholic priest in the world with a doctorate in clinical sexology. I wrote my doctoral thesis on the sexual attitudes and behaviors of gay priests in the active ministry in 1981. That was long before the Church was willing to acknowledge there was even such a thing as a gay priest. The fallout from this research blew my ministry out of the water.

In 1981, the same year I finished my doctorate, a remarkable thing was happening to gay men in San Francisco and elsewhere. They were dying of some mysterious disease. Some speculated that this was God’s retribution for the gay lifestyle. How quickly we leap to that conclusion when we are ashamed and frightened. Most of my friends died in the first wave, between 1981-85. None of us knew what to do. My friends looked to me for guidance, since I had a background in psychotherapy and religion. But, to tell you the truth, I was just as lost as anyone.

I found myself sitting with all these men as they were dying. It was ghastly. But sitting with death was precisely what I needed to do. It helped me to desensitize death and prepared me for what was to come. I realized early on that dying in America is often a very lonely and very passive affair.

I wrote “The Amateur’s Guide” because of the work I was doing with sick, elder and dying people – not just AIDS patients. I saw this pattern develop; the end of life is more difficult than it needed to be. In response I founded Paradigm, a nonprofit organization with an outreach to enhance life near death for sick, elder, and dying people. It provided an opportunity for participants to discuss end of life concerns and get the support they needed to fully live the end of their life. The program was so successful; I decided to put the program in book form.

Let’s talk about intimacy and end of life care.

Just because someone is dying doesn’t mean that they have stopped being human. One of the things that humans need in their life is intimacy. And sometimes that intimacy involves genital sexuality. But this concern is hardly ever talked about in terms of the end of life, nor is it included in disease-based discussions. I mean, when is the last time you heard someone talk about the sexual concerns of people with cancer or heart disease? Our culture is uncomfortable with the concept of sick, elder, and dying people having such desires. But if you listen to these folks they’ll tell you what they need and ho difficult it is to live without.

Could sexual intimacy be considered a form of palliative care?

I would think, yes. If you’ve had an active intimate/sex life up until the point you were diagnosed and then all that suddenly disappears, there will be problems. I’m not just talking about genital sexuality; I’m talking about all intimacy needs we humans have — being present to, touching, as well as pleasure. It’s all about what is possible, on a personal level, with one’s intimate partner(s). So many people, even people who love sick, elder, and dying people don’t know how to touch them. And sick, elder, and dying people often report that the only touch they receive is very clinical touch. And that’s not all the life affirming, if you ask me.

Complete Article HERE!

End-of-Life Care Should Be Universally Provided and Need-Based

By James Hamblin, MD

Dr. Ezekiel Emanuel, oncologist and chair of the Department of Bioethics at the National Institutes of Health (and, entirely incidentally, brother to Rahm and Ari Emanuel) has long been a champion of end-of-life care. He spoke today with Corby Kummer at The Atlantic’s Washington Ideas Forum, where he made succinct points about strategies for systematic improvements in our approach to caring for those nearest to death.

First, all doctors and nurses should be formally trained in end-of-life care and discussions. Walking into a room with a patient and their family to discuss a terminal diagnosis or prognosis is — especially at first — overwhelming, and impossible to just know how to do. Emanuel admits that facing those situations remains “scary,” even as a veteran clinician. He and most of his generation of physicians never received formal training in how to best discuss terminal illness with patients and offer palliative options, and some in training today still do not. Considering the large number of people who eventually face death, it is unreasonable that not all doctors and nurses are thoroughly prepared to help them as they do.

Emanuel also cited that more than 40 percent of hospitals in the U.S. do not offer access to palliative care, either within the hospital or after a patient has been discharged home. He believes that hospitals should be required to at least offer the option.

And finally, at present, eligibility for hospice care is predicated on having six months to live. Emanuel sees access to hospice as more aptly need-based, not calendar-based. Patients with symptoms warranting palliation, regardless of the estimated length of their remaining life, should be standardly offered care in that vein.

All of these changes would come as part of an ongoing shift in psychology and broader openness about death. Emanuel is quick to add the caveat that he is not talking about euthanasia or [shudder] … “death panels.” His inclination toward explicit clarification on that point stems from accusations that he and other leaders in the realm of end-of-life care have endured in the past. The fact that he still needs to make that clarification speaks to the persistent widespread misunderstanding surrounding quality end-of-life care. That mindset is and will remain the primary barrier to seeing these improvements out.

Complete Article HERE!

Anticipatory Grief Webinar

I have the pleasure of announcing an upcoming webinar on the topic of anticipatory grief with my colleague, Janet Edmunson.

Registration form and more information HERE!

What’s this grief I feel? My loved one hasn’t died yet!
by Janet Edmunson, M.Ed.

Tuesday, January 29, 2013

For family and professional caregivers

Webinar will be 30 minutes in length.

All attendees will be entered into a drawing for Janet Edmunson’s book Finding Meaning with Charles.

7:00 p.m. (Eastern)
6:00 p.m. (Central)
5:00 p.m. (Mountain)
4:00 p.m. (Pacific)

Webinar Description: Caregivers often face grief before their loved one dies. Professionals call that anticipatory grief. In this webinar, Janet will share her experiences with anticipatory grief along with ways to help cope with it while you continue to care for your loved one.

About Janet: Janet has over 30 years’ experience in the health promotion field. She retired in May 2007 as Director of the Prevention & Wellness for a staff of 20 at Blue Cross Blue Shield of Massachusetts. Since retirement, as President of JME Insights, she is a motivational speaker having spoken to hundreds of groups across the U.S. While working full-time, Janet took care of her husband, Charles, during the five years he fought a movement disorder with dementia. Janet wrote about her experience in her book, Finding Meaning with Charles. Janet has a Master’s degree from Georgia State University. She resides in South Portland, Maine.