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Q3 Reader Poll Results: Before End of Life and Palliative Care
During July through September 2019, the CLL Society conducted a poll among readers of The CLL Society Tribune. There were 106 complete responses with 95% of the responses from patients and 5% of the responses from caregivers. Of the respondents, 60% were 65 years of age and under and 40% of respondents were over 65 years of age.
The survey assessed whether people are engaged in end of life planning for themselves and/or a loved one. We also asked about basic understanding of the difference between palliative care and hospice care. To learn more about these topics, please click here.
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Our survey tells us that 76% of respondents have shared critical household information with each other, while 17% have not yet moved forward with this communication and 7% were unsure.
A slightly higher percentage of respondents, 79%, have shared medical treatment preferences should they or their partner no longer be able to communicate.
As we get into formalizing advance directives, the percentage is slightly lower with 72% of respondents having completed the process of putting their advance directives in writing, including a signed witness.
Only slightly more than half of the respondents, 56%, have provided their advance directives to their physicians and a trusted person who could deliver the information on short notice.
Many people do not understand the difference between palliative care and hospice care, including when to incorporate these services into their care. As we can see from survey results, only 53% of respondents said they understand the difference between these care options.
Lastly, we asked what knowledge or resources would help you feel more prepared to cope with end of life concerns for you and/or your loved one? Twelve people included a response to this open-ended question. Some of the responses included: Two requests for estate planning and legal resources; a request for information about hospice care vs. palliative care; and hospice care options at home vs. in a facility. One person asked how to talk with children and grandchildren. Requests for information about pain, lower drug costs, and wanting real-life experience examples. Two people requested information about physician-assisted end of life options.