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Intimacy & Advanced Heart Failure

Simple Tool Assesses Sexuality Concerns

Hunter Groninger, MD, and Anne Kelemen, LICSW

Patients with advanced illnesses face a variety of indignities —the specter of their own mortality, dramatically reduced physical abilities, constant pain. But little thought may be given to that most mortal of concerns—compromised physical intimacy. That’s why palliative care specialists at MedStar Washington Hospital Center decided to explore the matter further. Hunter Groninger, MD, director, Palliative Care, and Anne Kelemen, LICSW, Palliative Care social worker, designed a simple tool to assess sexuality and intimacy concerns among patients hospitalized with advanced conditions.

During the pilot study, 57 patients at MedStar Washington Hospital Center and MedStar Harbor Hospital were asked these questions during a palliative care consult:

♥ How much has your illness affected intimacy?
♥ How has your illness affected your relationships?
♥ Has this been discussed before or during your hospital stay?
♥ Is this helpful to talk about?

The researchers presented their findings to a recent meeting of the International Society for Heart and Lung Transplantation 2016 Scientific Sessions. The presentation focused on a key subset of these patients—18 patients receiving advanced heart failure (AHF) surgical therapies. Six had undergone heart transplantation and had their new hearts for an average of 62 months, and 12 had a left ventricular assist device (LVAD) with an average of 7.6 months since implantation.

Some 72 percent said that their condition had significantly or moderately impacted intimacy. For those facing the end of life, 83 percent reported the same feelings. All said that they had never been asked these questions before. Further, they wanted more conversation on the subject with their health care providers. Intimacy was defined broadly, including physical and emotional closeness, affectionate contact, sexual interactions and the communication of thoughts and feelings. “Intimacy is bigger than just sexual intercourse. It can include cuddling, holding hands or playing with children or grandchildren,” Kelemen says. Patients’ concerns included low libido, erectile dysfunction, lack of privacy and fear. They also cited difficulties in finding and maintaining relationships overall.

George Ruiz, MD, MedStar Heart & Vascular Institute’s chief of Cardiology at MedStar Union Memorial Hospital and MedStar Good Samaritan Hospital, wholeheartedly supports the work of the Palliative Care team. “By getting people with different points of view to focus on the same problem, we get to see more facets of care. This has made our focus even crisper.”

“We had talked about the issues around intimacy, and knew they were overlooked,” Dr. Groninger says. “Then a family member brought up the issue, and we realized that it should be part of all routine palliative care consults. Patients do want to talk about intimacy, however they define it for themselves.” But patients may not know how to bring up the subject. Kelemen describes such a case. “I had a patient who had been hospitalized a very long time, and was nearing the end of his life. His wife wanted to talk to me; she wanted to have some ‘alone time’ with her husband, but didn’t know how to ask his doctors about that.”

Both researchers noted that important biases often exist. First, clinicians often assume that intimacy only means physical sexuality or sexual health. Second, clinicians often assume that patients with advanced conditions were too sick to be concerned with intimacy and sexuality. “But we found that even patients at the end of life wanted to talk about these issues,” Dr. Groninger says.

“Heart failure systematically steals people’s humanity, taking away their ability to engage in living a full life,” Dr. Ruiz says. “This includes walking around the house, climbing stairs and sharing intimacy. As physicians, we are so focused on the day-to-day challenges of caring for very sick patients, that we can overlook important quality-of-life issues these patients face.” Kelemen stresses that addressing the issue is the whole point. “This is not just about addressing their concerns with VIAGRA®, it’s about having the conversation and encouraging conversations with their partners.”

Samer Najjar, MD, medical director of Advanced Heart Failure for MedStar Heart & Vascular Institute at MedStar Washington Hospital Center, supports the effort. “We recognize that intimacy is important to patients at every stage of life,” he says. Now that the results are in, Dr. Groninger and Kelemen want to study the issue further. They are planning a larger study, to include other MedStar locations and medical conditions using more specific questions. The goal: “We hope to educate providers about how to initiate this conversation,” Dr. Groninger says