Much of my blog this year will be devoted to health care and aging … an increasingly hot topic as the baby boomers age.  I hope to offer some provocative perspectives that will help readers thread their way through the complications of aging parents and/or their own inexorable march toward death. As is my wont, I will pose many questions and offer few answers.

Today’s blog, by Kathleen Pooler, looks at end-of-life care from the perspective of a nurse practitioner dealing with her own health issues as well as those of her patients.  

 

 

End-of-Life care “refers to health care, not only of patients in the final hours or days of their lives, but more broadly care of all those with a terminal illness or terminal condition that has become advanced, progressive and incurable.”

We’re all going to die. Doesn’t it make sense to come to terms with our inevitable death, to prepare ourselves and our loved ones so that our lives can be fully lived until we die?

As a nurse, I have been present to dying patients of all ages and their families. As a family member, I have grieved at the bedside of loved ones. As a cancer patient, I have faced my own mortality and been fortunate enough to get a reprieve from end-of-life issues, at least for the time being.

How can we best prepare for death and ensure that end-of-life care is delivered in a compassionate way that incorporates the wishes of the dying person?

I will explore these issues from a nursing perspective.

Look How Far We’ve Come…

I remember feeling overwhelmed as a new graduate nurse in 1967 working in an Intensive Care Unit. Patients clung to life as monitoring devices signaled minute changes and ventilators and IVs provided life-saving oxygen and medications. The dings, pings, swishing sounds and constant alarms of all this technology seemed to interfere with the notion of delivering compassionate, patient-centered nursing care. It took a conscious effort to remain focused on the fact that underneath all those buzzing machines and multiple wires was a wife, mother, sister, brother; a human being with fears and dreams. I felt as if I had to fight my way through the maze of technology to “see” my patient.

I still feel that way. Technological advances, both in access to care and in the type of care available, enable people to live well into their 90s and even 100s. These advances have created steadily rising expectations among both health care professionals and patients that a wide range of ailments can and should be cured. With so many options for treatment, health care providers are faced with increasing challenges to deliver the best quality of care while considering the patient’s unique circumstances and personal wishes.

I am not talking so much about a patient with a good chance for survival and a will to fight for life. Rather, I am talking about a person who, because of age or circumstance, does not have a reasonable chance to return to an acceptable level of functioning.

For example, as a nurse practitioner in a family practice, I recently saw a mammogram report for an 84 year-old patient whose late-stage Alzheimer’s had left her incoherent and unable to function. The report showed a suspicious lesion and recommended additional views but the family refused. After discussing the risks of possible cancer and subsequent death from untreated cancer, the patient’s husband concluded that a lengthy and painful course of testing and treatment would not be in her best interest.

I saw my responsibility as helping the family to understand the risks and to make an informed decision based on the best interests of the patient. The fact that the patient had an advanced directive in place facilitated this process.

How do we ease this transition?

A Nurse’s Perspective…

The answers to this question depend on a wide variety of factors including one’s religious /spiritual beliefs. I can only offer my perspective as a health care provider and a recipient of health care:

1. We all have responsibility for our own health. Although my nursing education charges me to promote wellness and treat illness, I prefer to do this as a partner of the person seeking health care. Therefore, I see my responsibility as ensuring that each person understands their options and is given the opportunity to state their end-of-life wishes.

If a person’s wishes are not known, it is the health care provider’s responsibility to institute lifesaving measures. In such situations, the family is a key component in the decision-making process. In other words, we not only minister to the patient, we minister to the family of the patient.

2. Options are available: Advanced care directives—also known as living wills or personal directives—are legal documents that support wishes regarding end-of-life care. A growing focus on hospice and palliative care programs within hospitals has helped to promote death with dignity, although compliance with health care directives can vary from state-to-state.

Consumers of health care need to be aware that they are available … and follow up to ensure that they are observed. We have a long way to go as a society in putting these protocols into action, but it is a start.

Five Wishes, a “living will with a heart and soul,” is an advanced directive created by Aging with Dignity.  I find it particularly helpful for people who are not sophisticated about medical technology and treatment, as it includes:

• Wish 1: The Person I Want to Make Care Decisions for Me When I Can’t

• Wish 2: The Kind of Medical Treatment I Want or Don’t Want

• Wish 3:  How Comfortable I Want to Be

• Wish 4:  How I Want People to Treat Me

• Wish 5: What I Want My Loved Ones to Know

3. In her book, No One Has to Die Alone: Preparing for a Meaningful Death, Dr. Lani Leary promotes involving the dying patient in decisions related to their death. She cites that “most dying patients fear the isolation and loneliness of dying more than the pain or finality of death.” (page xiii, from the Preface)

Let’s talk…

While we have the legal mechanisms available to ensure that anyone in the terminal stage of illness will have the option of deciding the kind of death they want, we all know of cases where a court order had to be obtained because the patient’s wishes were not known and/or the family disagreed. Many hospitals have ethics committees to review cases where there may be a conflict related to end-of-life care or if the patient’s wishes are not stated or documented.

We’re all going to die someday. Why not have your wishes known ahead of time so when the time comes your transition will be a time of peace and healing?

I have seen it work both ways—with and without advanced directives. The difference is striking. When my beloved father died in 2010, his wishes were known and honored. The grief was there but the sense of peace and solace in knowing his wishes were honored carried us all through and remains a source of comfort to this day.

We all have the right to have our final wishes honored and to die on our own terms surrounded by those we love. Do you have an advanced directive?  Have you talked to your loved ones about the kind of death you want?

Maybe it’s time to start this conversation.

I’d love to hear your thoughts on this ~

 

 

Kathleen Pooler is an author and a retired Family Nurse Practitioner.  Her memoir, Ever Faithful to His Lead: My Journey Away From Emotional Abuse, published in July, relays how the power of hope through her faith in God helped her to transcend life’s obstacles and disappointments: domestic abuse, divorce, single parenting, loving and letting go of an alcoholic son, cancer and heart failure.

Her work-in-progress sequel, Hope Matters: A Memoir explores how her faith helped to live a life of joy and contentment.  Kathy has also been published in several anthologies, including The Woman I’ve Become and My Gutsy Story Anthology.

She lives with her husband Wayne in eastern New York.

She blogs weekly at her Memoir Writer’s Journey: http://krpooler.com

 

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No so long ago, I viewed 70 as the beginning of “old age.”

Trouble is that today—my 70^th birthday—I don’t feel old.  Yes, I have grey hair, along with wrinkles in some places I would never mention in polite society. I do get annoying muscle cramps more often than I would like.  But I can climb six flights of stairs several times a day, and the body that I see in the mirror looks a whole lot better than it did when I was 18. I have fewer aches and pains today than I did at age 50, a combination of eating better and getting more exercise. And good genes certainly don’t hurt.

Statistics tell me that I could live another 10-15 years; given my health and genes, it could be easily be another 30 (my mother lived to 90; I have countless friends with parents approaching 100).  I’ve been encouraged by several articles I read of late, including a recent editorial in the New York Times by David Brooks, that report on the “U-Curve,”–the pattern of changing levels of emotional satisfaction over the course of life.  Statistics on the U-curve suggest that happiness/ contentment declines from childhood to about age 50, and then trends upward more or less steadily. Given my own emotional pattern over the decades, I should be bordering on ecstasy by 100.

But do I really want to live another 30 years?

An interesting approach to the question of aging comes from physician, academician and bio-ethicist Ezekiel Emmanuel. In a recent article in the Atlantic Monthly, he coined the term “American immortal”—what he calls the obsession “with exercising, doing mental puzzles, consuming various juice and protein concoctions, sticking to strict diets, and popping vitamins and supplements, all in a valiant effort to cheat death and prolong life as long as possible.”  You can add to his list, of course, all of the various medical interventions—mechanical, surgical and pharmaceutical—that we use to mask the reality of our inevitable aging and mortality.

Emmanuel has concluded that he would prefer to die at age 75. In his view, that is plenty long enough to have lived a full and rich life with a satisfying career, a good marriage and a thriving family, including grandchildren.

It seems at first, to be a curious position for someone who opposes suicide, assisted or otherwise. But his argument is not that he refuses to live beyond 75.  Rather, he has decided that as he approaches 75, he will cease taking pro-active steps to retard aging or prolong his life. No flu shots, vitamins, or anti-biotics. No screening exams. No surgical or mechanical (e.g., a pacemaker) interventions. No chemotherapy.  No drugs (e.g., statins or blood pressure meds) to keep his bodily functions performing as if he was still young.

The only medical treatment he will consider is palliative care, if he needs it to keep him comfortable toward the end. In his words, “I will die when whatever comes first takes me.” This is, of course, what mankind has done for thousands of years … until medical technology took over the management of aging and death in the mid-1900’s.

I find his argument compelling, although I’m not sure 75 is the age I’d choose.  Perhaps 80 or 85.

And I also find myself pondering the boundaries of palliative care. Shouldn’t it include the repair—surgical, pharmaceutical or mechanical— of traumatic events that diminish the quality of life but will not kill you? A broken arm or leg?  A case of poison ivy. A hernia. And what about diet and exercise? Eating properly is its own reward, just in how you feel, regardless of its long-term benefits for your health.  Similarly, exercise stimulates brain chemicals that make you feel better, mentally and physically. Should I stop doing it simply because it has the age defying-ability to preserve muscle tone and bone density?

What would you do?

P.S. Emmanuel explicitly reserves the right to change his mind at any point along the way!