Quality is never an accident; it is always the result of high intention, sincere effort, intelligent direction and skillful execution; it represents the wise choice of many alternatives. ~ William A. Foster
A reader writes: So… both of my in-laws passed away in different hospice facilities at different times in S. California. They received no food or water of any kind, just getting pain medications, and they passed within a week.Former President Jimmy Carter is in Hospice care (in a different State, I know), AND hospice care NOT palliative care is what has been told he is receiving. He has been in this care for months now, so he must be receiving some food and water (although maybe no meds … other than for pain?). I, in no way, begrudge him his wonderful life, but my husband and I are confused by this.
Is Hospice care done differently in different states?
My response: Hospice focuses on treating symptoms, not on curing an illness. Like any healthcare service, the quality of care a hospice offers may vary from state to state, and even within the same state, depending on the standards to which the hospice adheres. The best hospices seek accreditation from, are surveyed by, and are certified by organizations such as CHAP, JCAHO, ACHC and CMS. Certification demonstrates to the public that these hospice programs adhere to the industry's highest standards for quality care. When you're looking for a hospice service for a family member, you are wise to conduct your own due diligence to make sure that the one you use is certified to provide the level of care you expect and deserve.
Regarding former President Jimmy Carter, my understanding is that he announced in February that he would forgo further medical intervention and spend the rest of his life in Plains, Georgia. According to a May 23, 2023 article in Politico, "Three months after entering end-of-life [hospice] care at home, former President Jimmy Carter remains in good spirits as he visits with family, follows public discussion of his legacy and receives updates on The Carter Center’s humanitarian work around the world, his grandson says. He’s even enjoying regular servings of ice cream."
I cannot speak to the level of care that your in-laws received, but I can tell you that standard hospice care would not deny a patient food or drink. If someone has the desire to eat or drink, there are no restrictions on doing so. However, for most patients, there comes a point where they simply do not want nor need food or liquids. Continuing to offer food and water, or opting for artificial nutrition or hydration (ANH) ~ such as nasal (NG) or stomach (PEG) feeding tubes or IV fluids for hydration ~ can actually complicate the dying process and lead to other health problems. This may have been the case with your in-laws. When a person is close to dying, the standard of care is to continue offering small sips of water/liquids, ice chips, hard candy or very small amounts of food via spoon if the patient can still eat or drink. Cues are taken from the patient in deciding when to stop. If they are no longer able to drink, their lips and mouth are kept moist with swabs, a wet wash cloth, lip balm or moisturizers.
If you have serious questions about the quality of care your in-laws received in hospice, I would urge to request a meeting with the hospices you used, to get your questions answered and to put your concerns to rest. (See, for example, When Hospice Care Fails to Meet Caregiver's Expectations.)
Afterword: Thank you, Marty, as always, for your help and insight. Yes, my in-laws were no longer interested in, or able to, really eat or drink. Hard to not have IV bags of fluids hooked-up, but we realize this goes against the process. Your words have helped both of us better understand the different levels of health/ability and care.
Related:
- 4 Common Myths About Hospice by Holly Bessoni-Lutz, RN
- Food and the Dying Process by Barbara Karnes, RN
- Forcing Fluids At End of Life by Barbara Karnes, RN
- Staff Concerned "We Are Starving Mom to Death" by Barbara Karnes, RN
- When Hospice Care Fails to Meet Caregiver's Expectations by Marty Tousley
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