Health Care – What is it?

 

Question-Mark-820x1024One of the goals of the Affordable Care Act was to expand access to regular and affordable health care for Americans. Underpinning this goal was a hard-to-argue-with notion that the nation, individually and collectively, is better off when its citizens are healthy.

Is that the same as saying that that all Americans have a right to health care? Even those who instinctively nod “yes” might qualify their answer, depending on how you define health care. Some types of health care are critical to good health, while others seem of marginal benefit.  Under the best of circumstances, the boundaries are far from clear.  And most types of health care are in limited supply, based on the availability of equipment, medical staff, facilities and drug supplies.  We can’t all have everything.

A starting point for the discussion might be the definitions given by the President’s Council on Bioethics in 2003:

    • Therapy: treatment of “known diseases, disabilities or impairments in an effort to restore a normal state of health or fitness.”  Included in this category are things like repair of broken bones, antibiotics for infections, surgical removal of tumors, pacemakers, and chemotherapy or radiation for cancers.
    • Enhancement: treatment “to alter the ‘normal’ functions of the human body or psyche so as to augment or improve native capacities and performances.” In this category are such things as discretionary plastic surgery, botox injections to remove wrinkles, or steroids to improve athletic performance.

This simple model, however, leaves many questions unanswered.

    • How do we classify vaccinations, annual visits to the dentist for cleaning, or periodic screenings for breast or prostate cancer? What about vitamins and exercise regimens, or anti-smoking campaigns. None of these quite fit the definition therapy or enhancement, but they are included in what is now called Preventive Medicine, a set of strategies to maintain health rather than cure illness.
    • Another challenge to this binary model is Palliative Care, which covers the spectrum of physical, emotional, spiritual, and social suffering that often accompanies illness.  Drugs and medical treatments are considered palliative if they relieve symptoms without having any beneficial or therapeutic effect on the underlying disease or illness.  Examples would be dialysis for kidney failure or Aricept for early-stage Alzheimer’s, both of which make life more manageable for a time, but do nothing to cure or reverse the underlying problem.
    • Yet another complication comes with Long Term Care, particularly for the elderly.  While everyday tasks like feeding, bathing and dosing out medications do not ordinarily constitute medical care, their absence leaves those with chronic illnesses and/or limited mobility prone to accidents or malnutrition.  These in turn lead to diseases or illness that may require acute or chronic medical care.

It seems reasonable, at first glance, to make therapeutic medical care available to all Americans. But should I have a right to any and all therapeutic treatments, regardless of my ability to pay?  Should I have the right to any and all procedures—a kidney transplant, for example—if I already suffer from multiple or chronic illnesses from which I will never recover?  Should I have the right to any and all procedures even if I am responsible—alcohol or drug additions, for example—for my condition? And should the standard of “normal” be the same for a 40-year-old as for an 85-year-old?

If your answer to any of these questions is “no,” you are left with even harder questions.  What types of procedures should be restricted or prohibited … and under what circumstances? Who should decide? Based on what criteria?

Similar questions apply to things that fall into the category of enhancement, preventive care, palliative, or long-term care.  Most would agree that pain-medication is a palliative treatment that should be available to anyone who needs it.  But what about Viagra, when it is used to offset a “normal” decline in physical function, but may help to restore emotional health.

What do you think?  Should health care be a universal right, regardless of the ability to pay?  Regardless of other health conditions?  If so, how would you propose to pay for the rapidly increasing costs associated with the aging baby boomers?  If not, what criteria would you use to decide who gets what?

A Nurse’s Reflection on End-of-Life Care

 

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 careEnd-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 ~

 

 

KathyPoolerBrighterKathleen 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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Living in Free Fall

 

Free Fall A recurrent theme in my life is that you grow the most when you step outside your comfort zone. It is a heady feeling to realize that a painful experience that had you in free fall for a time has made you stronger and wiser … to realize that, using Bradbury’s metaphor, you have indeed grown new wings.

What’s easy to forget, once those new wings have grown and set, is just how rough it is when you are in free fall … when you don’t know where you’re trying to get to … when you don’t trust your own judgment … when you have no idea quite what to do next.

It’s all the harder when you are in free fall off a cliff you didn’t even see coming.

To put this in perspective, I will take you back to 2008. Depending on how you count, I had changed careers half a dozen times over the previous 38 years, including several times when I dropped off the corporate ladder for a period of years. Some transitions were harder than others, some more successful than others, but there seemed to be a consistent pattern, one in which my skills in one arena provided a temporary branch to hang on to while I grew new wings in another.

When I decided to give up finance to be a creative writer, I expected this transition would go smoothly. After all, I was an experienced business writer. I’d taken university-level courses on creative writing. I’d published a memoir about sailing around the world at age 40.

Friday, I was a financial consultant.  Monday, I would be a writer.  How hard could it be?

Pretty hard, as it turned out.

What I overlooked, as I launched myself into the writerly world, was the common thread that stitched my earlier transitions into a satisfying quilt … the opportunity to work with smart people who were big thinkers. My success lay, to a very large extent, in my ability to carry out complex projects that these big thinkers—whether mentor, client or husband—believed were important.

In 2008, however, there was no client or mentor or husband. I had lots of ideas, but no way to set priorities or assess whether they were worth pursuing.

And then, one morning, as I waited for the first edition of Sailing Down the Moonbeam to be delivered, I recalled one of those wing-growing experiences as we sailed across the Pacific Ocean. Most of the time, my husband and I were vulnerable to unpredictable winds and currents. Setting goals was an exercise in frustration, since we could not control our progress on any given day. The best we could do was set a course that took us in the right general direction. All too often, we revised our course several times. More than once, we had to change our destination.

The metaphor seemed obvious.  If I wanted to I be a writer, I needed to write and hope my words would cumulate to a writer’s persona. Write something. A blog. A book review.  An essay.  Anything. Now, today.

It was a eureka moment.

I’d like to be able to tell you that I grew my writer’s wings that day.  I didn’t. Those simple goals got me out of bed every morning, but it was months before I did so with any enthusiasm.  It was several long and painful months before my wings started to grow.

Now, six years later, I have a writer’s wings. A novel and a memoir. A regular blog. A steady stream of freelance work. Invitations to speak to book clubs, libraries and community groups.

But once again, I seem to be in free fall. How can I be a writer if I don’t have a meaningful story I feel compelled to tell, or an idea I feel compelled to write about? Having just turned 70, I’m intrigued by the personal and societal challenges as the boomer cohort ages.  But how much of my thinking is unique enough to be worth writing about?

Once again, I seem to be grasping frantically for a branch to retard my free fall … give me a few extra moments to develop the wings I’ll need for my next act?  But what’s that next act? A writer in her 70’s with temporary writer’s block. Or a humanist for whom aging IS the next act, whether you write about it or not? Or maybe something else I haven’t even thought about?

What do you think? Can we still sprout wings at 70??

The Ineffability of Aging

 

IMG_9068No so long ago, I viewed 70 as the beginning of “old age.”

Trouble is that today—my 70th 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!