Last week Mr. Donald Keene asked about a couple who can’t afford good institutional care but doesn’t want to force either one into the role of caretaker for a long terminal illness. What are the options for a peaceful end of life experience for both?
A recent study in California notes that the top-ranked worries of dying persons are, (1) burdening family members with care decisions and, (2) burdening family with high medical costs.
The question and study pose what may well be an impossible tradeoff. Families can’t escape caregiving themselves unless they or someone else pays. Most families will not walk away, but even if they do, thirty states have filial support laws that may obligate families to reimburse nursing homes or others for end-of-life costs.
The best options, however, involve families working together to manage long-term care.
A very wealthy couple can usually pay for any desired end-of-life care, which makes the issue much easier.
Most of us, however, have limited money and may have other family members who will need it. An elderly couple may still support even older parents, or maybe they help their children or grandchildren. Yet it may be still possible to allocate some money for long-term care in the last stages of whatever illness may occur.
Medicare does not pay for long-term institutional care, but perhaps a couple has long-term care insurance. Or maybe they qualify for Medicaid, which is available for poor people. Elder law attorneys can help clients shed assets and become eligible for Medicaid, but the planning may take some time. There is a five-year (I think) look-back period for gifts and transfers, and there are many tricks, yet still, with some planning, many persons qualify. The tradeoff involves the advantages and disadvantages of shedding assets.
Hospice care helps people who are diagnosed to live six months or less. The care is palliative, not curative. Patients are treated for pain, and they are kept as comfortable as possible. Hospice care is often in the patient’s home and it qualifies for Medicare, but in-home care will require family involvement.
The California study mentioned above indicates elderly people worry about burdening their families. Instead of worrying, elderly people might better commit themselves to helping family members involved in their care. Here are some ideas:
- Cooperate with their family through end-of-life planning. There are many stories about elderly parents who refuse to discuss their situations or prospects with their children, and still other stories about belligerent elderly parents who make a caregiver’s task harder than it need be.
- Build a plan for the family’s response to possible long-term illness. Plan which family members may be able to offer direct care and what supporting roles others may play.
- Complete legal documents that will help family members conserve family resources. A partial list would include wills, advance health-care directives, durable powers of attorney and, if advisable, trusts. In each case, prospective patients can choose options that will ease a family’s financial and care-taking burdens.
Each plan will be particular to a family, and ideally it will help family members unify around a shared approach to a couple’s final years.
An ill person, along with a spouse’s help, can hasten the end of life. Options range from suicide to behaving recklessly to refusing medical interventions in case of illness. These are hard choices, but there are people who make them.
Hospice care may be thought of as a form of refusing medical interventions, and it is becoming popular.
Overlaying all the previous tensions is a person’s or couple’s spiritual values and beliefs. These are the deep and enduring principles that connect a couple with some large themes of human nature, and they help justify or reconcile a person during later life. They give people the strength to navigate the other tradeoffs with some degree of peace.
If the final years involve Alzheimer’s or serious dementia, then spiritual strength will be more needed by caretakers.
We would all like to avoid difficult choices near the end of life. But we must accept the world as we find it, and for many, such choices are inescapable. If a couple must navigate with family involvement and limited money, the path to peacefulness, it seems to me, is for an older couple to help one another and their families face the problems honestly and with compassion for all involved. Guided by their spiritual traditions, they will reconcile competing family needs and seek the understanding of their loved ones. A couple who can do these things will die in wisdom.
The rest of us can help where possible and refrain from judgment when an older couple makes decisions we might not make for ourselves.