“Don’t EVER put me in a home. Promise me!”
Countless people have had a similar conversation with an aging parent or loved one. Others have given these precise instructions to their own adult child.
With the holiday season upon us, you may be seeing aging loved ones whom you haven’t seen in some time. It is important to take note: Do you see a marked change in their physical appearance or their mental sharpness? Are they bathed, appropriately dressed for the weather, and is hair and/or facial hair well-kempt? Do they appear to have put on or lost a substantial amount of weight? Do they recognize family members, and can they remember past events and carry on a conversation?
If you observe a substantial change in a loved one, it may be time to reassess their personal care and living situation…even if you once made the promise to “never put them in a home.”
Different times, different measures
It is a difficult–even excruciating–ethical decision to override another adult’s wishes for their care and housing, but some circumstances require it.
Dr. Abigail Zuger is an associate clinical professor of medicine at Icahn School of Medicine at Mount Sinai and also practices internal medicine at Mount Sinai Roosevelt and Mount Sinai St. Luke’s Hospitals in New York City. In a recent blog post in The New York Times, Dr. Zuger recounts the story of an elderly patient who presented in the emergency room with infected bedsores covering a large portion of her back. For years, the woman (who suffered from severe dementia) had been cared for at home by her adult children–children who had once promised her not to put her in a nursing home to be attended by strangers–thus they had delayed bringing her for medical treatment of the bedsores.
However, the severity of the woman’s wounds and infection required that she be transferred for treatment at a skilled nursing facility, where Dr. Zuger surmised the woman would live out her days. It was not what the patient had said she wanted so many years ago, when she was still able-bodied and mentally sound. And it was a move that brought anguish to her adult children who felt they had betrayed their mother’s wishes.
This case brings to the forefront two crucial considerations for aging adults as well as their adult children:
Advance directives
Advance directives run the gamut from informal conversations to lengthy legal documents called living wills which detail the specific medical treatments a person does and does not want in the event they become incapacitated. They are intended to provide people some degree of control over their medical destiny, but often the realities of the future are quite different from what the person envisioned when these conversations took place or documents were created–Dr. Zuger’s patient being a likely case in point.
And advance directives can have additional shortfalls. They may not be detailed enough to adequately inform a patient’s care provider. Alternately, they may be overly detailed, making it difficult for doctors and family to adhere to the specificity. These instructions or document can easily be lost, missed during an emergency, or intentionally or accidentally ignored for a variety of reasons. And in some cases, like Dr. Zuger’s patient, steadfastly following these directives is simply not in the patient’s best interest and can result in delayed treatment of preventable medical issues. Further complicating matters, the laws regarding advance directives can vary by state. Learn more about advance directives in your state >>
Health care proxy
If you have not already done so, it is wise to choose a health care proxy, also known as a health care power of attorney. This is a designated person who can assess medical situations as they occur, consider the treatment options, and to the best of their ability, make healthcare decisions that are in line with your wishes. As with advance directives, a healthcare proxy can still face potential challenges in interpreting your guidance if unforeseen circumstances arise. Learn more about health care proxies >>
An evolving plan
During this holiday season as you gather with family, it can be an opportune time to have conversations about your personal wishes for care as you age or become infirm, or to asked aging loved ones what they want for themselves. But as the poet Robert Burns wrote, “The best-laid plans of mice and men often go awry.” Thus it is important to keep in mind that each individual’s situation will be different as the future unfolds, and it is wise to make peace with the fact that your vision for care in the long-term may not go exactly as you plan.
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