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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Comments

  1. Dear Mary, I appreciate the opportunity to be your guest. End-of-Life care is fraught with emotions and uncertainties,but it is a very important discussion to have. I am looking forward to hearing from others. Thank you for initiating this conversation.

    • Mary Gottschalk says:

      I so appreciate your offering this perspective … end of life choices is something we all need to think about, and you’ve opened up an important part of the process.

  2. Kathy and Mary, What a great conversation. There are so many ideas swimming in my head. The big thing is that America is a death denying society. We go back to these roots of the ICU which surfaced in the 50’s and 60’s, the same era as CPR, defibrillation. A time when we understood poorly the long term consequences of keeping some people with certain clinical presentations going against all odds. CPR does not benefit the very old or the advanced chronically ill person. And then the revelation of persistent vegetative states, where previously these folks would have experienced a natural and merciful death. And now the reality that most Americans will die over a long period of time of the consequences of a chronic disease. Indeed Alzheimer’s Dementia is a terminal illness. So what will cancer treatment gain the person with an advanced terminal illness? And so many other conundrums.
    I love “5 Wishes”. But many Americans do not, because it forces us to face the reality as Kathy says that we all must die. Just yesterday I was speaking with a gentleman with an advanced non-curable illness, trying to delineate his wishes for his health care proxy, when he says I just can’t stand talking about death anymore. Yet, when proxies do not know the wishes of the patient, and they must make a decision, they suffer from guilt and self doubt as to whether they made the right decision, after the person passes, perhaps even for years. So I explain delineation of wishes as a gift we give our proxy that spares them from the guilt of guessing about unknown wishes. And what about feeding tubes? Medical providers present them as a viable choice for those with dysphagia and aspiration, particularly those with say advanced dementia. Under these circumstances feeding tubes have no chance of doing what we hope. They do not improve nutrition and promote weight gain, they do not improve function, they do not change the status of wounds by better nutrition, and surely they do not improve the decline in general. And yet families and even health care providers who are surveyed will tell you they hope for all of the above. It is time to get real with honest conversation and dialogue. I have worked in two unique populations: the general public and Veteran’s of the American military. Give me the American military any day. I have seen no research about this but I believe because they have faced death, up close and personal it is much easier to have these conversations. Much easier than talking to children and grandkids about their 95 year old grandmother who is cachexic and dying of cancer who want “EVERYTHING” done. What the hell does that mean? Why do we offer treatments which do not have a chance of achieving what these folks hope for? Grandma is not going to survive or get better. As a matter of fact statistics are clear that grandma has a 3-5% chance of surviving resuscitation, but will not be discharged from the hospital or return to any previous level of function. There are some options that are not morally or ethically sound to offer, they are not legitimate choices, rather just a way to prolong suffering and waste scarce health care resources on interventions that do not have a snowballs chance in hell of working. So let’s keep talking.
    Susan Casler MS, FNP-BC, ACHPN

    • Mary Gottschalk says:

      Wow … so many ideas here …. there is an enormous debate — religious and philosophical as well as medical — on the subject feeding tubes.

      I think you observation about the military vs non-military is also fascinating. Would you consider doing a guest blog on that … or on one of the other topics you mentioned above?

    • Hi Sue, I was hoping you’d weigh in as a your certified palliative care nurse practitioner–among the first in the country. I appreciate your elaboration of the practical aspects of end-of-life care –the human tendency to deny death; guilt felt by the families who are faced with considering suspending routine medical care, beyond comfort care and the overall cost of keeping people alive who have little or no chance of living any kind of quality life. Your point about the military population being more accepting of impending death is interesting. It does my heart good to know that Palliative Care is becoming a norm. My family experienced the healing aspects of having the team intervene with my beloved Aunt Rose when she was hospitalized with end-stage leukemia in 2012. Her oncologist had not been forthright with her about her diagnosis or prognosis. When the team sat on her bed , held her hand and gently disclosed the diagnosis, prognosis and plan, we all, including Aunt Rose, felt immediate relief. It was not what we wanted to hear but in the face of the reality, the honesty and compassion helped us all move forward. Thanks so much for sharing your insights and experiences.You are so right. Let’s keep talking.

  3. Kathy and Mary,
    What an important conversation. I too believe that we all are responsible for our health care. Doctors and nurses can be healers. But more than that they need to be in a partnership with a dying patient and his or her family, so that everyone understands the options one has when a terminal diagnosis is made.

    When my mother was dying of lung cancer, we were fortunate that her doctors didn’t encourage her to go on with chemo, which would have been useless. Though at times she wanted to fight it, she didn’t have the energy to even enter the battle. As a result she had a longer and more comfortable life than she would have, had she insisted on going all out. She had a living will, but because of the beginnings of dementia, it was up to the rest of us to follow her stated wishes.

    I will shortly amend my living will, stating in more detail what I want and don’t want when my time comes.

    Thanks for taking on the issues involved in health care and dying.

    • Mary Gottschalk says:

      Joan … I think the key point you’ve made … which echoes Kathy’s post — is that our proxies need to know what we want. Having an advance directive is no guarantee that your wishes will be met, particularly if you are not strong enough to fight for your wishes!

    • Joan, your mother’s example highlights some of the issues and dilemmas that arise in end-of-life care. Thanks so much for stopping by and sharing. I’m glad you are thinking ahead to your own living will. We all need to do that.

  4. Mary, thank you for offering this discussion in the context of the larger one; I look forward to following it.

    Kathy, Hi. You raise so many good points. I have had my advance directive in rough draft form for perhaps five years now. My problem is that my wishes will change. As I envision filling this form out for a 90-year-old me, I am stopped by the fact that it would apply if the 66-year-old me needed it next week. What do I want today? That is different. Can you speak to the evolution of our advance directives? How can we be sure that all the copies are updated if I were to do one say every five years. Just curious. On a more personal note, does the advance directive that I’m sure you’ve done reflect your wishes for you “tomorrow” or were you seeing a much older, weaker you as you filled it out?

    • Great question, Janet. Your advanced directive can be updated at any time and should be if your condition changes, Mine is written to state, “should I be unable to make my own decisions and if I am in a vegetative state with no hope for recovery, I do not wish extraordinary measures. I wish to die peacefully with comfort care only.” My proxie is my husband and next, my daughter . I have verbalized my wishes. It’s important to have this conversation ahead of time, even it it feel premature. My next step is to file this with my promary doctor. I hope this answers your question. Let me know.

  5. Mary Gottschalk says:

    Janet … you have a good question about updating your advance directive. As I noted above, having it updated and current is not guarantee … many hospitals are not required by law to observe them …. many doctors will try to overrule your advance directive based on a desire to “fix” you … different states impose different wording requirements.

    You need to consult a lawyer in your state … talk to your doctor … find out what the policies are at your preferred hospital …. and get a copy of “Last Things First” by Jo Kline Cebuhar … covers a lot of the legal and medical technicalities ….

  6. The most important statement here is we are all responsible for our own health care and we must make our wishes known, in writing.
    I work with the elderly, most of them Hospice clients and as sad as death can be, there is nothing more comforting than a painless, peaceful death where the family members pull together to be present for their dying loved one. Sadly it rarely happens like that but when it does, it is a blessing.

    • Well-said, Doreen. Our society is primed to avoid death, but I agree, death can be a peaceful and beautiful transition when family members pull together for their dying loved ones.. I appreciate you joining in this conversation. You are doing important work. I think of it as sacred ground. Thank you for stopping by and sharing your insights.

  7. Mary, thank you for hosting Kathy on this all-important topic not only for those of us growing older but also the generations coming behind to care for us when needed.

    Kathy, your post is crystal clear and you give excellent advice to all of us as we are, as Doreen says, we are all responsible for our own health care and we must make our wishes known. Currently, we have a family member with rapidly advancing dementia. Thankfully her wishes are in writing. Also, our DIL’s grandmother, 79, has been diagnosed with ovarian cancer, stage III, last week. Today they are meeting with an oncologist/gyn surgeon to assess her situation. I don’t know if her wishes are know, but I hope so.

    But we must remember there are the young also needing your wisdom and advice. I follow a young woman online who has fought her battle with cancer for too long and is now in hospice care knowing she will leave behind a young pastor husband and four children ranging in age from 15 to 4 years of age. I often wonder if someone has advised them about end-of-life wishes. I pray so.

    Thank you for the clarity with which you wrote this post and I’ll be sharing it as far and wide as possible to keep this conversation going among others, hopefully families.

  8. Thanks for stopping by and joining in this conversation, Sherrey. I hope your DIL’s family and your friend and her family are discussing final wishes. It is so important that we all break the silence with our families and health care providers so affairs will be in order when the time comes. I’m grateful that Mary has hosted this series and am honored to contribute. I appreciate you sharing this message.

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