As we sadly witness the aged and the afflicted among us approaching and suffering the end stage, we realize that the far end of life can be bleak, frightful, desolate and pleasureless — physically and mentally. As abilities to think and do slip away, empty and tortuous blackness can loom ahead and envelop us.
Let’s share some helpful thoughts:
We’ll agree that, whether in the institution or at home, that’s when the boundless love, sympathy, empathy and companionship that we can offer are most welcome and beneficial. After all, besides palliative drugs, what else is there?
Nursing homes do their best to alleviate the depressing frustration, but they can accomplish only so much. In the patient’s mind, their staffs are appreciated but merely are hired workers, not precious family and friends. There’s no substitute for family and loved-one visits. It’s so sad to see families place folks in the institution, some even abandoning them there as derelicts, and then ignoring them, allowing them the joy of visits only occasionally or not at all.
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Despite staff’s best efforts, screw-ups and poor service readily can happen in nursing homes, and they do. Staffing with reliable, competent, compassionate caregivers is foremost, but challenging. Managers strive for the highest degrees of professionalism and care quality. Evaluators inspect and report rigorously.
Vital core funding from Medicaid, Medicare, philanthropic gifts and insurance claims is conditioned on performance.
But Medicaid and Medicare fall increasingly short of covering the real cost of delivering even adequate basic care. More than half of all patients are on meager Medicaid. In all fairness, it’s commendable that institutions do as well as they do. We must realize that it’s harder and harder to maintain the standards of care that both we and management seek.
In view of that, and on the brighter side, here’s a “win-win-win” opportunity:
Invest quality time in helping out as a volunteer at your institution of choice. Help the residents, including your loved one, enjoy life. You’ll deserve your genuine “feel-good.” You and the staff can bond and build trust in each other, and develop a wholesome “we’re in this together” rapport. You gain firsthand insights about how and why things are done, and can become Loved One’s best care advocate. Your deeds, love and friendliness are priceless boosts to Loved One’s, and everyone’s, morale. However large or small, your help is a welcome plus. You win, Loved One and the neighbors win, and the institution wins.
In fact, how about both Loved One and you starting well before either of you needs the home? Then the eventual moves — including your own — can become an easy and happy transition into a familiar environment.
Managements’ and professionals’ judgment, recommendations and decisions about patients’ treatment plans really are sound and, in the long view, seldom wrong. That includes reducing or terminating no-longer-effective services or adding new ones. Changes might call for transfer to a different unit or facility that’s better equipped to handle the person’s evolving and deteriorating condition.
Long-term care insurance companies judge claims according to activities of daily-living criteria. Licensing, accreditation and professional and paraprofessional health care must comply with proven protocols. When the family, certainly caring but understandably not always entirely objective or knowledgeable, disagrees, the professional staff usually is right.
There are many valid complaints. That’s why hard-hitting ethical practices committees and in-house and community-based ombundsmen and counselors are there for you.
Beyond the long-term-care residence and the hospital is hospice, the specialized place or care environment for peaceful end-stage care. It can be free-standing, a part of the long-term-care hospital or health care system, or even at home.
In our time, the hospice concept has emerged, to transition at end-stage from medical treatment to professionally managed palliative, spiritual, emotional and comfort care. Whether in-patient or at home, Loved One and the family are attended and counseled by very specialized practitioners, making dying a less stressful part of living. Their mission: compassion, dignity, comfort, peace of mind, assistance with personal matters and spiritual wholesomeness. Bereavement counseling and therapy even can continue to the grieving survivors.
Good news: Some health and long-term care insurance, Medicare, Medicare advantage plans, PPOs and HMOs now offer hospice care benefits.
And, of course, the appropriate documents and information about the long-term care and end-stage arrangements should be in everyone’s “doomsday manual.”
Sooner or later, we all hear it: “Life just isn’t worth living any more. Just let me end my suffering.” Medical science’s miracles postpone life-ending events, deep depression disease helplessly distorts our minds, and our senses and physical abilities fade away. More and more of us will reach the point where the desperate and hopeless blackness totally destroys all reason to live.
No wonder the idea of suicide is so widespread when “pulling the plug” isn’t an option, despite the blessings of palliative and comfort care. More desperate lives end by suicide, often by deliberate self-starvation, than you might think.
Our desperate, end-stage loved ones can die in peace, by suicide or not, if we let them know their families grant them compassionate, understanding and loving goodbyes. If this reality bothers us with religious, moral or personal issues, we can seek guidance from our own advisers, especially professionals.
Many who want suicide seek help from health-care providers. Suicide isn’t illegal anywhere, but assisting it is. Professionally assisted suicide is legal in only a handful of states, while the “death with dignity” or “assisted suicide” movement is growing and gradually gaining legal legitimacy in more jurisdictions.
Assisted suicide is serious business medically, ethically, morally and legally, and there are many criteria and requirements. Only the person may order his/her own suicide and only when fully aware and perfectly competent to do so — no one else can. Other hurdles are the physician-provided medical certification of less than six months’ remaining life expectancy, minimum-duration residence in the state, concurrent lucid understanding by the patient and the family of his/her request, mental and cognitive awareness tests, multiple affidavits by the patient, waiting periods following approval and mandatory psych and medical consultations.
Are those safeguards obstacles? They’re protections against impulsive and questionable death decisions, irreversible once carried out and frequently influenced by duress, frivolity, depression, anxiety, coercion, mental incompetence or intimidation.
If possible, it’s hugely desirable to have the patient’s wish in writing, signed and witnessed, and are best as statements in the medical directive and ethical will. Even though the fiduciaries are legally, and indeed morally, constrained to directly make the arrangements, the statements prove the patient’s intent and help to protect them from suspicion, both by the authorities and the family.