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?

Health Care and You

 

 

images-1Greetings!  I have returned after an extended and not-entirely intentional absence from the world of blogging. A significant factor has been the time required to prepare for a university level course, entitled “Comparative Religion,” that I began co-teaching as of September, 2015.

Readers of my blog could be forgiven for asking what qualifies me—a confirmed agnostic and an ex-Wall Street maven—to teach a course on religion. The answer is that a key element of the course is the recurring collision between modern health care and many religious traditions. My contribution is less on theology and more on bioethics—the many different ways in which religious beliefs affect health care, and particularly people’s end-of-life decisions.

As I noted in a blog last November, my interest in bioethics and health care was provoked by the prolonged and painful deaths suffered by both of my parents.  My father, bedridden with the complications of diabetes at age 54, repeatedly asked to be allowed to die. Sadly, four of the five time his heart failed, his doctor took extraordinary measures to get it pumping again. Even as a devout Catholic, he had the moral right to be allowed to die a year earlier, but he did not have the stamina to overcome his doctor’s refusal to let nature take its course.

By contrast, my mother romped through eight decades with élan. At age 70, while still of sound mind, she handed my brother and me detailed instructions from the Hemlock Society (now Compassion & Choices) for facilitating her death if she was no longer able to manage day-to-day life on her own.  Her advance directive, however, contemplated a stroke or terminal cancer rather than dementia. When Alzheimer’s unexpectedly stole away both her mental and physical capacities, there was little we could do.  No longer of sound mind, she did not meet the requirements for physician-assisted suicide in even the most liberal of states.

In my blog last fall, I initiated a discussion of several health care themes that seemed particularly relevant to the baby boom generation. Going forward, my focus will be broader, to include a host of issues that fall under the general heading of bioethics, and address health care issues faced by all age groups. Health care issues to be explored include the challenges posed by modern drugs and medical technology, as well as the challenges that many religious traditions face in this environment and the insights that they still have to offer.

Early health care topics will include:

  • How did we get to a place where aging has become a disease, something to be repaired and reversed … a place where we no longer seem to know what it means to let nature take its course?
  • Should health care be a universal right … and if so, what kind of health care?  If not, what criteria do we as a society use to decide what health care is necessary and appropriate?
  • Who should decide what kind of medical care we receive … whether to initiate or terminate treatment … based on what criteria?
  • What are your rights when medical treatment is deemed futile?  Can you … should you … override your doctor’s recommendation?  If so, under what circumstances.
  • What are the economic, financial and/or legal implications of the medical choices many of us will have to face … for ourselves and our families … for society as a whole?
  • Is there a “right to die” at a time and under conditions of our own choosing?  If so, does that imply a right to commit suicide … to have someone assist us with suicide?
  • What are the ethical implications of clinical research trials?
  • What are the pros and cons of “controversial” medical procedures: physician assisted suicide … clinical trials for new drugs and treatments … stem cell research … in vitro fertilization … organ transplants … designer babies?

As in the past, my goal is not to promote a particular point of view, but to prompt a vigorous discussion of the complex issues facing us all … not just the aging baby boomers, but the generations who come behind us, and must live with the consequences of the decisions we make—or perhaps even worse, the decisions we don’t make.

I hope you will join me — and bring your friends — on this journey.

Death and the Meaning of Life

 

“Each day, we wake slightly altered, and the person we were yesterday is dead. So why, one could say, be afraid of death, when death comes all the time?”      ~  John Updike

“To the wise advice that we live every day as though it will be our last, we do well to add the admonition to live every day as though we will be on this earth forever.”  ~ Sherwin Nuland

 

the meaning of deathAs I delve more and more into the medical and ethical issues of aging, I find repeated references to the tendency in modern society—and particularly America—to avoid the subject of death. I plan, over the next few months, to explore some of the social and cultural reasons for this pattern, but today’s blog is a personal muse on why death—the very fact of death—gives added and richer meaning to life and to the opportunities that await us.

Long-time readers of my blog (or readers of Sailing Down the Moonbeam) will know that a watershed event in my life occurred on a 35-foot sailboat in the middle of the Pacific Ocean. After a week of sunny days with calm seas and a cloudless sky, a companion sailboat, aptly named Pacific, missed the scheduled meet-up on ham radio. Initially, no one seemed worried, as the yacht’s absence was easily explained by battery troubles or a broken radio antenna, either of which might take a day to fix.  No one saw any reason to call for help.

I did not view their absence with such equanimity.  What if it wasn’t a mechanical problem? What if Pacific had collided with a whale or a submerged container that fallen off a freighter, and the crew was drifting in a lifeboat? We were well outside the shipping lanes.  The odds of finding a small lifeboat floating in an unknown direction from an unknown starting point were almost nil.

When Pacific did not reappear on the second day—and still no one suggested calling for help—panic struck. From the beginning of our sailing voyage, I assumed that if we had a major problem, someone would come to our rescue, much as I had always assumed that an ambulance would appear if I had an accident on a New York highway.  Suddenly, I came face to face with the imminence of death, with the very real possibility that my life could come to an abrupt end on sunny day in a calm sea.

The watershed moment did not occur that day. Rather it came several days later, when I realized that imminent death had always been a possibility—that my faith in the appearance of the ambulance on the highway was as illusory as my belief in help at sea.

Once I accepted that the fact that my being was out of my control, I wanted to use my time and energy for things that mattered to me … to seize every opportunity …. to make sure I used every moment of my existence as if it were my last.

I wish I could say that I have always been true to this philosophy. What I can say is that the awareness of the fragility of life has been a constant reminder that I should not fall prey to what society thinks is important.  Since every moment could be my last—I could die before I even finish this sentence—every new moment is a new opportunity to live my life better and more wisely.

This muse was prompted, in part, by my interest in the subject of aging and death.  It was also prompted by a recent philosophy class in which we studied the often-controversial German philosopher Martin Heidegger.  At the risk of oversimplification, Heidegger sees much of our everyday existence as “falling prey” to the social, religious and cultural mores imposed by those around us, as well as the generations that have lived before us. Even those who see themselves as rebels or revolutionaries or free-thinkers are doing little more than re-arranging the ideas and concepts handed out by others.

For Heidegger, the only escape from this “inauthentic” existence is death … not the actual death that terminates human life, but the possibility of imminent death. For Heidegger, the ever-present possibility that this moment will be my last also offers a perpetually renewing opportunity to live in a way that is meaningful to me.

Does the possibility of death add meaning—and opportunity—to your life?

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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