Creating better deaths in long-term care
Eleanor Feldman Barbera, Ph.D.
I walked into Mr. Hobart's room, ready for my initial evaluation. He was a thin, graying man whose loose clothes hung in folds around him. He'd spent every day last week in chemo.
He spoke quietly, discussing his estrangement from his family and the good old days hanging out at the bar. None of his drinking buddies were around. He had no visitors.
Following our talk, I stopped at the nursing station. “What's his prognosis?” I asked the nurse. “Not good,” she said. I paid a visit to the social worker and asked softly but very bluntly, “Is there a reason we're medically torturing this man?” “We wanted to put him on hospice, but his brother won't return my calls,” she told me. She promised to try again. By the next week, hospice services had been arranged. Mr. Hobart died five weeks later.
Unfortunately, this scenario is a fairly typical approach to end-of-life procedures in long-term care. The case highlights common end-of-life challenges in LTC facilities:
• No clear leadership within the treatment team regarding end-of-life care — Often team members, regarding this as a medical situation, expect that the physician will be addressing these issues with the resident and their family. The physician, on the other hand, may view dying as an emotional issue and expect that the social worker and other team members will be handling it.
• Lack of communication with the resident regarding end-of-life wishes — With no designated team member to broach the topic, residents often follow along with the care plan assuming they're going to get better and that someone will tell them when they've reached the point where medical interventions are unlikely to help.
• Lack of communication with family members regarding prognosis and care decisions — Addressing treatment decisions and whether or not to consider hospice or palliative care is often a time-consuming series of discussions with family members and it needs to be handled with sensitivity. This can be difficult to manage in what's become an ever fast-paced care environment.
• Aggressive medical treatments with very low likelihood of success — There are increasing numbers of medical treatments that can be performed, but questions arise about whether they should be: Is the treatment likely to help? Has the resident been properly informed of the risks and side effects of the treatment? Does the resident understand how it will affect his or her quality of life? Atul Gawande, MD addresses these questions eloquently and in detail in his book, “Being Mortal,” which I highly recommend.
• Late referral to hospice — Hospice is an excellent support for residents and their families. (Unlike in LTC facilities, the entire family –— not just the resident — is seen for treatment.) Most often, however, the referral for hospice services is made when the resident has days or weeks rather than months to live and much of the benefit of hospice services is lost.
As organizations that serve people who are ill and in the last years of their lives, we can create better deaths by improving end-of-life care.
• Establish an end-of-life care committee — Select and train members from various disciplines to be part of the committee. This specialized group can work with the resident's ongoing treatment team to speak with the resident and their family members about end-of-life care and decision-making.
• Use available tools to discuss care decisions with residents and their families — Here are two resources to be aware of:
• The Conversation Project is “dedicated to helping people talk about their wishes for end-of-life care” and offers a free conversation starter kit. It empowers residents to talk to their loved ones (and their health care providers) about their wishes. Offer copies of the kit to residents as needed or include the kit in your reading library or in the lobby.
• My book, “The Savvy Resident's Guide,” addresses topics such as hospice, advance directives, and burial funds in an easy-to-read format designed specifically for residents. Consider adding the book to your library and using it as part of a resident discussion group.
• Discuss end-of-life care in group family meetings — Offering information and a discussion of these issues for groups of families allows the organization to reach multiple families simultaneously and helps families see they're not alone in making difficult care decisions.
• Educate staff about hospice and palliative care services — In-service training can raise staff awareness of these services and when to offer them to residents and families.
As long-term care experts, residents and their families look to us to support them along the emotional and often frightening path of end-of-life care. With proper handling, we can help our residents have a “good” death and make the experience less painful for their families. By doing so, we also make it less distressing for our staff, who witness these losses, and strengthen our organizations.
Eleanor Feldman Barbera, PhD, author of The Savvy Resident's Guide, is a 2014 Award of Excellence winner in the Blog Content category of the APEX Awards for Publication Excellence program. She also is the Gold Medalist in the Blog-How To/Tips/Service category of the 2014 American Society of Business Publication Editors Midwest Regional competition. A speaker and consultant with nearly 20 years of experience as a psychologist in long-term care, she maintains her own award-winning website at MyBetterNursingHome.com.