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End-of-Life Care: What We [Should] Talk About When We Talk about Death

nursing homeTalking about death and dying can be scary. Many of your residents and their families might like to avoid it for as long as possible. But success in the senior living industry depends increasingly upon relationships. One way to build relationships with residents and their families is to facilitate talks about difficult, end-of-life questions.

You can equip yourself and your staff with thoughtful talking points around these topics. Here are some to start the conversation.

Maybe we’ve been doing it wrong

A host of writers have tackled the subject lately. Notably opening the conversation up again was Dr. Atul Gawande’s 2014 volume Being Mortal notably opened up the conversation again. His insights have spurred further and fuller conversation about how we view death and care in America.

Dr. Gawande traces his own medical training, in which there was “almost nothing about aging or frailty or dying.” He cites his father’s experience discovering a spinal tumor as the launchpad for his own personal meditation and subsequent call for change in our healthcare system.

In an excerpt from his book that appears in Slate, Gawande explains that our perceptions have become skewed. “Lacking a coherent view of how people might live successfully all the way to the very end, we have allowed our fates to be controlled by medicine, technology, and strangers.”

Gawande illustrates how caregivers can identify priorities using thoughtful questions. Even before anyone is actively dying, consider questions like these with residents and family members to help clarify best courses of action:

  • What are your biggest fears and concerns?
  • What goals are most important to you?
  • What trade-offs are you willing to make?

As you have these conversations with clients and their families, you may realize the questions are useful at many stages of life, not just at the end.

Get comfortable with ambiguity

Reading and recommending the stories of others can help senior care staff, residents, and families adjust their expectations for these end-of-life conversations. Katie Roiphe, in her book, The Violet Hour, investigates six writers at the ends of their lives. She showcases their stories, from highly articulate to highly distressing, in an attempt to add to our understanding of death and to surface a range of responses to it.

In a New York Times article, Roiphe writes, “while nearly everyone has a fantasy of a ‘last conversation’ with someone they love, very few people actually have it . . . because the proximity of death does not transform personalities, or compel us to cut through to the heart of things, however much we want it to.”

Conversations around end-of-life care will not always elevate or bring closure. They may often be uncomfortable. In death, as in life, Roiphe says, we tend to leave things, “messy, unresolved, dangling.”

A new approach to end-of-life care

Journalist Ann Neumann adds her voice to those calling for change, not just in how we talk about death, but in how we actually care for those who are facing end-of-life decisions.

Neumann writes in a San Francisco Chronicle article about her father’s death from non-Hodgkin’s lymphoma and how she was, “woefully unprepared for the challenges of caring for him, the anxiety, the sleeplessness, the bone-numbing grief, the disruption of [her] career.” She explains in an interview how for generations, processes of death have remained hidden, institutionalized, and managed by professionals, “so those of us who are dying or caring for the dying have no idea what’s coming.”

UC San Diego researchers have begun seeking out ways to personalize death, in keeping with the movement to personalize medicine. “Finding out what kind of death a person would like to have should not be a taboo topic,” Dr. Dilip Jeste says in The LA Times. Jeste and his colleagues are working on a research-based, broadly defined idea of what it means to have a “good death.” They’ve found little existing research on the topic of death from the past 20 years.

Based on the research that does exist, Jeste and his team have so far identified 11 themes that people believe contribute to successful dying.

  • Dignity
  • Pain-free status
  • Quality of life
  • Family
  • Emotional well-being
  • Religiosity and spirituality.
  • Life completion
  • Treatment preferences
  • Preference for dying process
  • Relationships with healthcare providers
  • Other

Jeste and his team hope to add to this research and develop checklists for the terminally ill to help families, communities, and healthcare workers objectively consider the elements of a good death.

Starting the conversation

Since 2012, The Conversation Project (TCP) and the Institute for Healthcare Improvement have worked to raise awareness around end-of-life issues and to provide conversational resources for families, communities, and caregivers.

TCP’s Getting Started Guide for Communities is designed to help engage residents in end-of-life care conversations. There’s no magic formula, but they recommend starting with three questions:

  • Who is the audience you are trying to reach?
  • How can you best reach them?
  • What actions do you want them to take?

TCP recommends you anticipate how your audience will respond to the topic of end-of-life care. It’s also a good idea to identify other community members and organizations you could work with to expand the conversation beyond your own walls. Here are just a few from their list of possible partnerships:

  • Businesses and local employers
  • Elected officials
  • Faith-based organizations
  • Family counselors and therapists
  • Prisons/jails
  • Homeless shelters and services
  • Senior advocacy organizations
  • School district employee benefits departments and parent-teacher organizations

The TCP Community Resource Center offers even more ideas and tools for planning in advance, hosting events, promotion and publicity, and measuring your effectiveness.
Plan in advance

Educate your staff in the acronyms and terms used in advance care planning. Make sure these terms are clear to families and residents as well. Gather lists of resources and comparisons of options for things like Power of Attorney.

Conversation games, glossaries, and style guides are also good ways to acquaint staff and partners with terms and usage related to advance care planning.

Host events

You can grow community involvement around advance care by hosting conversations or presenting in other forums. TCP offers sample agendas, facilitation guides, and discussion questions for community meetings, conferences, and faith-based events.

TCP also hosts streamed and recorded speaker training sessions online and provides checklists and packets of materials for campus, employer, and social events.

Promote and publicize

Want samples of ads or press releases? How about info on participating in awareness days? TCP sends out a newsletter with ideas for how to begin conversations. Social media tip sheets and guides like this one from the CDC can help you boost awareness even further on a variety of digital and social platforms.

Measure your effectiveness

Finally, the TCP offers a list of metrics that help you consider your overall effectiveness:

  • Community partners involved
  • Speakers trained
  • Presentations given
  • Newsletter recipients
  • Social media followers
  • Email inquiries

All of TCP’s tools are available for preview or download and customizable for your community’s needs.

FTI Consulting’s Kerry Shannon recommends in McKnight’s that if families don’t know what questions to ask, it may be up to caregiving facilities to offer consistent, repeatable structures in which conversations can take place.

Learning to ask the right questions of your residents and their families is one way your community can address this universal need, even if we don’t yet have all the answers.