The holiday season will soon be upon us and with it will come out-of-town family members visiting their loved ones in long-term care settings.
Early November is a good time to increase the focus and training on customer service so that the facility is performing at its best when those infrequent but important guests arrive. It’s also a suitable moment to consider how to best aid families in discussing end-of-life care for their aging relatives.
Visitors who haven’t seen loved ones in several months may notice a physical or cognitive decline, making them more aware that life’s end is approaching. The holidays are also a time when several family members may be together and can discuss end-of-life concerns in collaboration.
While many residents will have completed advance directives upon admission, there are others who haven’t done so and those whose desires have changed. In addition, there are other details that may need addressing, such as readiness for hospice care, funeral arrangements, a last effort to repair fractured relationships or a chance to say good-bye.
Families invariably need assistance with these conversations and, as those who provide care to the ill and dying, this is a good opportunity to showcase the organization’s compassion and expertise in this area.
Inform families of declining condition
Family members often assume that unless someone tells them otherwise, their loved one is stable. I’ve heard many adult children make comments such as, “But nobody told me she was dying.” There is implicit regret in that statement, like they weren’t prepared for the loss and they thought they had more time for discussions.
Such remarks can also reflect anger that this aspect of their parent’s care wasn’t handled with greater sensitivity. While some deaths come as a shock to all, many endings in long-term care follow a period of decline that is apparent to those who work in nursing homes but may not be clear to outsiders, particularly those who are emotionally involved.
It’s not unreasonable on the part of family members to expect that someone on the team might let them know, when possible, that Mom isn’t doing well and might not be around too much longer. This information is often relayed informally by a thoughtful staff member, but it’s worth implementing and training staff on a formal procedure.
Family members will long remember the way in which the facility handled the death of their loved one and their impression can impact the likelihood of referrals to the facility. A nursing home might be an inappropriate recipient of strong emotions after a loss, but nevertheless one scathing report on a local online message board can have disproportionate negative repercussions.
Utilize a team approach
One possible protocol would be for the care plan team to identify residents who have shown a significant decline in functioning and to work closely with colleagues to broach this with family members. The medical staff, such as a physician or nursing supervisor, might discuss the medical aspects of a loved one’s decline, including options for palliative or hospice care.
The social worker can assist with guidance and necessary paperwork, and the consulting psychologist can offer sessions for residents with their family members to address emotional concerns. The presence of clergy can be of comfort and assistance as well.
Teach families how to discuss end of life care
Even with the knowledge that their relative is approaching life’s end, families frequently have no idea how to talk about the issue. Psychologists who study end of life conversations, such as Brian Carpenter, Ph.D.1 at Washington University in St. Louis suggest that such discussions are a process as opposed to a single conversation.
Rather than raise the topic over the yearly Thanksgiving dinner, he recommends that families address issues in small, manageable pieces over time, tackling finances, care wishes and funeral plans separately. A brief conversation might take place during a visit over Thanksgiving weekend, another might occur during a break for Christmas or the New Year.
To assist, facilities can hold family information sessions, offer educational handouts, post helpful links on the organization’s website, refer those in need to local mental health providers and make them aware of grief support groups in the community.
There are an increasing number of helpful tools to facilitate end of life discussions, including CareConversations.org, which is a “public engagement initiative with a goal to have every person’s wishes for end-of-life care expressed and respected,” or the organization Death Over Dinner, which encourages people to discuss “how we want to die,” noting that it’s “the most important and costly conversation America isn’t having.”
Another resource is the Life Conversation Tool, a series of questions “designed to help people with chronic, life-limiting illnesses gently make their wishes known, while they can still express them.” Designed by medical researchers, it doesn’t focus specifically on end-of-life wishes but instead offers a way to begin difficult conversations by asking questions such as, “Where or how would you like to spend your time or energy?” and “What is most important in your life?”
High-caliber end-of-life care includes not only determining and following the wishes of the residents, but also helping families plan for and cope with the impending loss of their loved ones. This is not only likely to result in better deaths (and more positive reviews of the facility), but it also can improve the professional quality of life of workers, who observe on a regular basis how deaths are handled by the organization.
Eleanor Feldman Barbera, Ph.D., author of The Savvy Resident’s Guide, is an Award of Excellence winner in the Blog Content category of the APEX Awards for Publication Excellence program. She also is a Bronze Medalist for Best Blog in the American Society of Business Publication Editors national competition and a Gold Medalist in the Blog-How To/Tips/Service category in their Midwest Regional competition. To contact her for speaking engagements and/or content writing, visit her award-winning website at MyBetterNursingHome.com.