“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
Most everybody wants to live longer and better. Yet these twin desires naturally diverge at some point for each of us. Modern medicine can patch us up for only so long. When we see and accept this and plan accordingly, then how we define quality of life can change too.
Through medical advances and life-saving technology, the baby boomers will live an average of twenty-five years more than their grandparents. This longevity is an unprecedented achievement, but has a downside. Many of us will decline very slowly, only to repeat the tired adage, “don’t get old.”
Unfortunately, you can see and feel this weight in any hospital, skilled nursing facility, and in most every family. Few experiences illustrate this truth more dramatically than caring for an aging and dependent spouse or parent.
What can we reasonably do to ease the situation? The answer is straightforward but not easy. In short: Each of us can be clearer and more outspoken about what we want AND don’t want in preparation for serious and chronic illness.
If our intent is to live as long as possible, it’s important to say so. Our doctors and the hospital team will oblige. If living as well as possible is our goal, it’s important to make that clear. Then our loved ones and clinical team can help us weigh the benefits of various treatments alongside their burdens and risk of ill effects.
A New and Unfamiliar Opportunity
Through modern medicine, 8 out of 10 of us now die gradually, well aware of our predicament. We have the novel, and perhaps daunting opportunity to have a say in how, when, where, and with whom we die.
We’re realizing that at some point it’s okay, and even necessary to decline further life-prolonging treatments by saying, “enough is enough.”
The Intensive Care Unit and “The Grey Zone”
A modern Intensive Care Unit (ICU) is a thing to behold. The Unit’s technological complexity and capability are nothing short of miraculous. And that’s the expectation one naturally has of such a place. The ICU’s claim to fame is to support recovery after trauma or life-saving surgery.
Keeping very sick patients alive who are not likely to ever leave the ICU is the unit’s shadow side. The narrow threshold between life and death, sometimes called “the grey zone,” can be a harrowing place. Advanced medical technology can prolong this time of limbo for weeks, months, and even years.
A family member’s inability to accept their loved one’s impending death can extend this liminal time to a hellish degree. There are over 100,000 ICU beds in our country. Roughly forty percent of the patients who lie in these beds will not leave the ICU alive.
It’s important to grasp that on the ICU, the life support equipment is not only buying the patient more time, but also giving the family time to reconcile, reach consensus, and prepare to let go.
Some of the most distraught conversations that I participate in and overhear are the result of poor communication and planning between family members prior to the current hospitalization. If you could see and hear for yourself, just once, the debilitating guilt and remorse that family members struggle with in the ICU regarding life support, I believe that you’d have The Conversation with your family and complete an advance directive in no time at all.
The Field of Bioethics
In many cases the prescribed use of life support has outstripped morals and ethics. When is it morally and ethically acceptable to allow for death?
This is a deeply personal question that begs thoughtful reflection and a personal response. If this question is not addressed, our healthcare system’s default is to prolong life whenever possible. You can count on it.
Unfortunately, many procedures and treatments keep a person alive even when there is no chance that they will improve or ever leave the hospital. Prolonged misery and moral distress are too often the outcome.
The field of Bioethics was originally a response to unethical research by physicians during wartime. Today it has evolved to guide and protect both patients and clinicians in making difficult, life and death decisions. Today, bioethics are as relevant as ever due to the growing emphasis on shared decision-making and patient and family centered care.
Our Right to Refuse Life Sustaining Treatment
It was the Patient Self-Determination Act, in 1991, that formalized patients’ rights to refuse life sustaining medical treatment. This is when the Advance Directive came into general use.
Our ability to decide ahead of time, and in “real time,” the limits of life prolonging treatment, has never been more important.
Through conversation with our healthcare agent and with our doctors, we can decide how aggressive and how prolonged, life sustaining treatments will be.
In the event of an entrenched disagreement regarding patient care, whether family or clinician centered, an ethics review can be requested.
Hospital Ethics Committees have become an active voice of mediation. The dilemmas they address most often pertain to end-of-life decision making, specifically the decision to continue, to refuse or to withdraw life-saving measures.
A Slow Way to Go
As we live longer the odds increase that we will either be taking care of a loved one with advanced dementia or become the one requiring care.
Over time, it’s likely, we will be both. A very sobering prospect indeed. Advanced dementia ranks among the slowest and most difficult ways to die.
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.
An estimated 6.2 million Americans over the age of 65 are living with Alzheimer’s Disease. One out of three Americans over the age of 85 are afflicted with the disease. There is currently no cure, only medications that slow and draw out the dying time.
Our nation’s 15,000 Skilled Nursing Facilities, with 1.7 million licensed beds, are overflowing. Two-thirds of those who die of dementia will do so in nursing homes.
Caring for a loved one with dementia can be a full-time job, often without pay, for years to come. On average, a person with Alzheimer’s disease lives four to eight years after diagnosis.
While patients with advanced dementia may benefit from conversations intent on easing their suffering, beyond a certain point such conversations appear to be little use.
More staggering figures: there are currently over 16 million Americans taking care of family members who are living with Alzheimer’s. Two-thirds of dementia caregivers are women. One out of three caregivers are older than 65.
This flurry of numbers and information can be overwhelming. Please forgive me for being the bearer of such sobering news.
A Call to Action
It takes a coordinated, team effort to provide quality dementia care, whether in a skilled nursing facility, or at home.
A willingness to discuss this possible eventuality and include specific guidance in the Advance Directive can make a real difference.
One of the most tender chores I’ve had while working in a “Memory Care Unit” is feeding pureed meals to non-verbal patients with advanced dementia. If I can no longer feed myself, I’ve asked my son to please “cease and desist.”
In her compassionate and practical guide, The Art of Dying Well, author Katy Butler offers this cogent directive from her own Living Will:
“I wish to remove all barriers to a natural, peaceful, and timely death… If I am eating, let me eat what I want, and don’t put me on “thickened liquids” even if it increases my risk of pneumonia. Do not force or coax me to eat. Do not authorize a feeding tube for me, even on a trial basis. If one is inserted, please ask for its immediate removal.”
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” on 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 relatively merciful exit at some point. Bottom line: there’s no easy exit in this case.
This has been a tough Post. Thanks for hanging in there with me. Let’s take a break.
Next Week: ‘A Field Trip To Hawaii : )
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‘Safe Journeys, until next week –
DSW