Editor's note: This popular story from the Daily Briefing's archives was republished on Jan. 7, 2020.
Read Advisory Board's take on this story.
In a now-viral tweet, Alastair McAlpine, a palliative pediatrician at Paedspal Cape Town in South Africa, shared responses from his patients on "what they had enjoyed in life, and what gave it meaning," Sherie Ryder writes for BBC News.
For an assignment, I asked some of my terminal paediatric palliative care patients what they had enjoyed in life, and what gave it meaning. Kids can be so wise, y'know. Here are some of the responses (Thread).— Alastair McAlpine (@AlastairMcA30) February 1, 2018
McAlpine said he decided to share the twitter thread to share an uplifting message amid the sheer quantity of negative news on his feed. Here's what McAlpine's patients, who are between the ages of four and nine, said:
The takeaway, according to McAlpine? Understand that laughter can ease pain. "Be kind. Read more books. Spend time with your family. Crack jokes. Go to the beach. Hug your dog. Tell that special person you love them" (Ryder, BBC News, 2/1; Alasdair McAlpine tweet, 2/1).
Tomi Ogundimu, Research Partner, Health Care Advisory Board
When a patient is sick, the treatment plan is usually clear: combat the disease at all costs. But that's just not the case in a palliative care setting.
That can leave some providers feeling lost at sea—uncertain about the goals of treatment, and unclear about the strategies and utilization philosophies that will best serve their patients. And of course, the challenge is even greater when treating terminally ill children, who can't always clearly express their own wishes.
So it's remarkable to see Dr. McAlpine's tweet series, which opens a window into what terminally ill children truly care about. As it turns out, terminally ill children aren't so different from terminally ill adults: They care about the things that have brought them joy in life—especially their families.
For this reason, palliative care providers would be wise to focus on providing strong, holistic support for the whole family. Hospital-based programs can, for instance, redesign patient rooms to be more "homelike" and family-friendly, while cross-continuum programs can onboard close family as members of the care team.
Further, all palliative care teams should consider bringing on additional team members to serve these patients' unique needs. Adjunct team members include:
To learn more about how you can help guide patients through difficult end-of-life choices, read our white paper, "Resources for End-of-Life Decision-Making," which breaks down available resource types, characteristics, and effectiveness.
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