Through medicine and life-saving technology, the silent generation and now the boomers live an average of twenty-five years longer than their parents. This longevity is an unprecedented achievement yet can have a significant downside.
We are the beneficiaries and victims of scientific success. Serious, chronic illness is an invention of the late 20th century, the fruit of our species’ intellectual prowess, the culmination of scientific progress.
— Dr. Ira Byock, The Best Care Possible
Dr. Ira Byock has been a guiding force in the palliative care movement over the past forty years, and I want to acknowledge his significant contributions as a gifted clinician, educator, author, and activist.
As eight out of ten of us now die gradually, we have the novel opportunity to have a voice in how, where, and when we die. Although people are learning to be proactive, too many are quietly suffering slow and tragic deaths.
Skilled Nursing
Our nation’s 15,000 Skilled Nursing Facilities, with 1.7 million licensed beds, are overflowing. An estimated 6.2 million Americans over the age of sixty-five are living with Alzheimer’s Disease. One out of three Americans over the age of eighty-five are afflicted with the disease.
Our thirst for longevity combined with no exit strategy has created a tremendous burden. You can see it in any hospital, skilled nursing facility, and in most every family. Few experiences bring this reality home quicker than caring for an aging and dependent loved one. What can we do to alleviate the situation?
Each of us can be clearer and more outspoken about what we want AND what we don’t want in preparation for and during our dying time. If our goal is to live as long as possible, it’s important to say so. The hospital team will oblige. If living as well as possible is our goal, it’s important to make that clear.
That way, our loved ones and clinical team can help us weigh the benefits of various treatments alongside their burdens and risks of ill effects.
When is it morally and ethically acceptable to allow for death? This is a deeply personal question that begs thoughtful reflection and response. If this question is not addressed, the institutional default is well established.
Technology can keep a patient “alive” almost indefinitely. In too many cases the prescribed use of life support has outstripped morals and ethics. Many procedures and treatments keep a person alive even when there is no chance that they will improve or leave the hospital. Prolonged misery and moral distress are too often the outcome.
Bioethics
Originally a response to unethical research by physicians during wartime, the field of bioethics has evolved to guide and protect both patients and clinicians in making difficult decisions. Hospital ethics committees have become the field’s most visible arbiter. The dilemmas they address often pertain to end-of-life decision-making, specifically the decision of whether to continue, refuse, or withdraw from life-saving measures.
It was the Patient Self-Determination Act that formalized patients’ right to refuse life-sustaining medical treatment, which was when the advance directive came into general use.
Today, bioethics are as relevant as ever due to the growing emphasis on shared decision-making and patient and family-centered care. In the event of an entrenched disagreement regarding patient care, whether family or clinician-centered, an ethics review can be requested.
The Continuing Care Community
The continuing care community (CCC) is a popular model for those who wish to age in place, and who have the financial resources to afford it. This senior living concept has been honed and improved over the years. My favorite rendition, grounded in old school Quaker values, is the Kendal Senior Living Communities (see Kendal.org).
The peace of mind and relative security of living in a community where an appropriate level of care can be easily adjusted as we age is an attractive investment.
But buyer beware: There are personal care homes that do NOT offer skilled nursing. A resident’s in- creased need for nursing services can quickly lead to a “thirty-day notice” of discharge. The fine print in the welcome package (often a fifty-page document) will spell out the criteria for discharge. Be sure to take the necessary time to understand a prospective community’s strengths and limitations.
Dementia and Memory Care
As we live longer, the odds increase that we will either be taking care of a loved one with dementia or that we will become the one requiring memory care. Over time, it’s likely, we will be both — a very sobering prospect indeed. For me, this is one of the most compelling reasons to be proactive in planning ahead and in talking candidly with my son (my agent) about my values and preferences.
Advanced dementia ranks among the slowest and most insidious ways to die. Caring for a loved one with dementia can be a full-time job, often without pay, for years on end. On average, a person with Alzheimer’s disease lives four to eight years after diagnosis. One in three seniors dies with Alzheimer’s disease or some other form of dementia.
There is currently no cure, only medications that slow and draw out the dying time. While patients with advanced dementia may benefit from conversations intent on easing their suffering, after a certain point, such conversations appear to be of little benefit. Two-thirds of those who die of dementia will do so in nursing homes.
Coping Strategies
It takes a coordinated, team effort to provide quality care, whether at the hospital, at a skilled nursing facility, or at home. Willingness to discuss this possible eventuality and include specific guidance in the advance directive can alleviate untold anguish.
One of the most heart-wrenching chores I’ve had while working in skilled nursing facilities is feeding pureed meals to non-verbal patients with advanced dementia. If I can no longer feed myself, I’ve asked my son to cease and desist. It’s written into my advance directive.
While there is no sure way to avoid ending up in a memory care unit, the best proactive hedge I’m aware of is to choose comfort measures only in one’s advance directive, including the option of no antibiotics in the event of a nursing home placement. This leaves the door open for the old person’s friend (pneumonia) to provide a merciful exit at some point.
In sitting with nursing home residents, listening to various stories, I often find myself saying, “I wish things had turned out differently.” The familiar response is “Me too,” or perhaps just an outstretched hand in recognition that someone still cares. This is the dark side of a package deal handed to each of us through the extraordinary medical advances of the twentieth century.
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A Medical Advice Disclaimer
The content of this blog is for informational and educational purposes only. No aspect of its contents is intended to substitute for professional medical advice, consultation, diagnosis, or treatment. The author is a spiritual care provider, not a doctor. Always seek the advice of your physician or other qualified health care provider with questions you may have regarding a medical condition or treatment and before undertaking a new health care regimen. Never disregard professional medical advice or delay in seeking it based on something you have read here.
Next Week: A Last Resort
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Until next week, ‘Safe Journeys
DSW