Phenomenology Online

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Completing a Personal Directive: Signing Your Life Away?

 

As a nurse who has worked with many dying patients, some young, some old, sometimes I think I have seen too much and know too much about death and dying. Yet, at other times I think that what I really understand amounts to nothing. I can not comprehend what it is like to know with some certainty that you are not likely to experience the joys of another Christmas holiday spent with family and friends, to know that you will never again savour the invigorating fragrance in the air that signals the long-awaited arrival of spring, to know that you will not live long enough to see your children or grandchildren take their first step, graduate from high school, get their first promotion. I do not know what it is like to know that I am near death; I have not lived that experience. Although intellectually I concede that death is life’s one certainty, on some other level I think that I may be the exception to this rule. I have difficulty grasping the idea that I will one day be dead. The thought of my own death fills me with an overwhelming sense of darkness, emptiness, and sadness. Will I be missed?

Cherishing Jason’s Living and Dying…

Jason was only 22 years old when he was diagnosed with acute leukemia. I met him for the first time when his disease had returned after a period of remission of almost a year. He was preparing again to undergo the physical onslaught of chemotherapy in an attempt to gain another remission–to ward off death for a second time. Chemotherapy is not pleasant. It meant he would lose his hair, experience violent bouts of nausea and vomiting, require multiple infusions of platelets and other blood products, and suffer from intolerable fatigue. My memory is blurry about the specific details of his life and illness. What I do remember, however, is the way he purposefully set out to live his life to its fullest regardless of his diagnosis and prognosis–he was determined to keep on living until the moment of death–he was in the captain’s seat charting the course of his future. I do not ever remember him complaining or saying “Why me?” Perhaps he wrestled with these questions before I knew him. That I do not know.

One of his medications was scheduled at the same time as the game show “Wheel of Fortune” was televised. At the appointed time with his medication in hand, I would walk into his room, glance at his tiny bedside television screen, and blurt out the answer to the puzzle. This routine became so predictable that Jason came up with the scheme of financing me to go to the city where the show was being produced to be a contestant. The deal proposed was that we would split the proceeds from any money I won. It was only a fantasy, but somehow it typified Jason’s zest for life, his sense of adventure. We shared many memorable moments, good and bad, over the next year and a half as he was in and out of hospital. I admired his strength and bravery and his sense of humour. Despite the limitations of his disease and his young age, he was definitely in charge of his life or at least the way he was choosing to live it. When he was out of remission for the third time, he made the decision that he did not want to receive further chemotherapy or any other life-sustaining treatments. He was discharged from hospital shortly thereafter and lived out the remainder of his days in the comfort of his own home surrounded by family and friends. He did not want his life to be extended through the use of invasive therapies; he did not want to die a technological death. I still think this was a courageous decision. It was not one that was particularly well-accepted by the medical establishment, but I recall him telling me that it felt like the right decision for him. I respected him for taking a stand and deep inside I, too, somehow felt that it was the right decision for him. I did not want him to suffer any more. In some ways, his decision also made his death easier for me as I did not have to be its witness.

Will I be able to face my own mortality in such a positive and proactive way? If I could go back in time and talk to Jason and other individuals that I have known who have purposefully planned their life before death, I would ask them what the experience of “dying well” meant to them. I would ask them what being able to actively plan their own end-of-life meant to them. I would tell these individuals that their lives left a mark on the world they left behind, that they left a mark on me.

Contemplating My Own Living and Dying…

My own acceptance of and planning for death are goals to be accomplished in the future. Although I think about death a lot, read about it in books, and see it in movies, I have not been able to bring myself to prepare my own personal directive. For those who may be unfamiliar with this term, a personal directive is a document comprised of: 1) a set of written descriptions of the type of health and personal care an individual does or does not want to receive; and 2) the identification of a proxy (agent) who is the person(s) that the makers of the directive would want to make personal decisions on their behalf, if and when they are no longer able to participate in the decision-making process. The proxy is compelled legally to abide by the wishes outlined in the written document. If there is some ambiguity or if a particular situation has not been addressed in the written declaration, the proxy is asked to help interpret what care the individual would want to receive given the specific set of circumstances that has arisen. In Alberta, when signed and witnessed these documents carry legal authority.

I sit in front of a blank screen on my computer ready to write, prepared to document my wishes about the type of personal and health care I would want to receive if I were seriously ill and no longer able to make decisions for myself. My bladder is recently emptied; the radio is turned off; a large glass of cold water is situated within arm’s reach on my desk. I am primed to sit here until this task is complete. Scattered across my desk are examples of different personal directive templates that I have collected over the years. I pick up the first one, clip it into place on the paper holder affixed to the monitor, and begin copying its introduction into my blank document.

In this Directive I have stated my wishes for my own health care should the time ever come when I am not able to communicate because of illness or injury. This Directive should never be used if I am able to decide for myself. It must never be substituted for my judgement if I am competent to make these decisions.
If the time comes when I am unable to make these decisions, I would like this Directive to be followed and respected. Please do everything necessary to keep me comfortable and free of pain. Even though I may have indicated that I do not want certain treatments, I recognize that these may be necessary to keep me comfortable. I understand that my choices may be overridden if the treatment is necessary to maintain comfort.

Suddenly, I am flying down a steep ski slope out of control. Icy wind is lashing at my cheeks. My ski poles are flailing helplessly through the air. A treacherous rocky cliff looms just ahead…The traffic light changes to green. The walking signal illuminates. I confidently step off the curb. I hear the crunch of bones. My body is brutally heaved into space…The scorching heat of flames surrounds me. In the smoky darkness I begin to panic. I can’t find the door…An alarming shiver runs through my body, making me tremble from the top of my head to the tips of my toes. I am no longer connected with the computer and the keyboard or the task at hand. I am leaning back in my chair, staring out the patio doors leading to my balcony. The sun has started to burn through the heavy fog that silently hangs in the cold winter air and clear blue sky is slowly unfolding. The branches on the trees are still. Every few seconds a car passes by and I hear the muted sound of its engine. Maybe it is too quiet here in my living room. I get up from the chair and turn the radio on, just loud enough to provide some background noise. Now that I am up, I refill my water glass and get a snack from the kitchen. Almost an hour has gone by since I began this task. Progress has been painstakingly slow.

Okay, I must give this another try. Maybe I should look at another example of a personal directive. Maybe it will capture the essence of what I want to tell the world about the way that I want my life before death to unfold. Maybe.

I, Dianne Godkin , of Edmonton , being of sound mind, make known my wishes. If the time comes when I can no longer take part in decisions for my future, I have chosen one or more option(s) as indicated by my initials. If I have an incurable condition, as determined by two or more physicians:
_____ 1. I direct that I be allowed to die naturally without medical intervention.
_____ 2. I direct that I be allowed to die with comfort measures such as nursing care and relief of pain.
_____ 3. I request no cardiopulmonary resuscitation nor admission to an intensive care unit.
_____ 4. I request to live my last days at home rather than in a hospital if this is agreeable with my family.
_____ 5. I donate any of my tissues that are of value for transplants.
____ 6. Other
These statements are made after careful consideration and are in accordance with my strong convictions and beliefs. I have asked ____________to be my healthcare agent to make treatment decisions on my behalf. This permission shall remain effective in the event that I become incompetent or unable to make decisions for myself. If my healthcare agent is unavailable, another person will be identified in accordance with local legislation.

This seems pretty straightforward. All I have to do is put my initials beside the statements I agree with. I read the first one: I direct that I be allowed to die naturally without medical intervention. What exactly does this mean? What is a natural death? The only natural death that I can think of is one that occurs as a result of old age, where your heart just tires out and you die quietly in your sleep. But I am not old, at least not that old. And if I die in my sleep, I won’t need a personal directive. I go on to number two: I direct that I be allowed to die with comfort measures such as nursing care and relief of pain. Is nursing care a comfort measure? How do I explain the grimaces of pain on the patient’s face, as I, a nurse, slowly turn her from side to side to prevent the development of pressure sores? How do I explain to a young boy that this injection that causes him to hurt is necessary? How do I tell family members that their loved one is deceased? I scan down the list to number four: I request to live my last days at home rather than in a hospital if this is agreeable with my family. Yes, I think I’d rather die in familiar surroundings than in a cold, sterile hospital room, but my family all live at least 3000 kilometres away. Would I expect them to come and stay with me until I die? I have good friends who live close by. Would I expect them to put their lives on hold to care for me on my deathbed? The answers are not clear to me. Some choices others might have, I do not. The written words of others do not adequately reflect how I want my life before death to transpire. I will have to use my own words. But I am too tired now and my head hurts, I cannot think about this any more today. I close the document, not even bothering to save what I have typed. I will try again tomorrow. But tomorrow never seems to come.

Why is it that tomorrow never comes for me? It has come for others. There are people out there who have made their wishes known, who have written them down in black and white, who have signed in ink their name on the dotted line. What was it like for them to author their own personal directives, to confront their own mortality in this way? How did they do it?

Suffering with the ‘Other’…

The memories of my wife’s heart attack are forever etched in my mind. I stood helplessly by in stunned silence as paramedics pummeled her chest and wrenched a tube down her throat. I watched her body violently pitch off the kitchen floor in response to a jolt of electric shock. In the aftermath, my once vibrant and capable wife was reduced to a shell of her original self. Over the next few months, as I watched my wife slowly dying, I started for the first time in my life to think about my own death, I mean really seriously think about my own death. I do not want to suffer as my wife did. In my personal directive, I have written down explicit instructions about the way I want my death to occur. What I want most is to die as peacefully and comfortably as possible.
(Edmund)

After hearing Edmund’s story, I am left with an overwhelming sense of Edmund’s own pain. It is almost palpable. As he witnessed his wife’s resuscitation and her subsequent disability, he suffered along with her. He felt each electric shock she received traverse through his own body. He gagged as if the tube was being shoved down his own throat. Every day of his wife’s remaining life, he came face to face with her physical and mental deterioration. Was it this experience of seeing someone suffer pain and the indignities often associated with total dependence on others that prompted Edmund to complete his own personal directive? Maybe. But in my nursing career, I too have witnessed many individuals’ prolonged suffering and indignity, sometimes when it seemed needless. Yet, I am still unable to prepare my own personal directive. Perhaps it is not enough to see someone suffer, maybe one must see someone whom you love and respect suffer; maybe one must see one’s closest family member or best friend slowly and painfully dying. Is it because I have not had this experience that I am unable to earnestly reflect upon my own death or formulate my own end-of-life wishes?

Edmund tells us clearly that he does not want to suffer the way his wife did. In writing his own personal directive, Edmund wants to protect his body from the invasive medical technologies experienced by his wife. He does not want his chest pummeled, a tube wrenched down his throat, or a jolt of electricity to course through his body. He tells us that he wants to die peacefully and comfortably, to “die well.” But could there be another reason why he has prepared his own directive? Edmund knows firsthand how painful it was to watch his wife’s arduous and agonizing journey to death. Is it perhaps his loved ones, rather than himself, that he really wants to shield from excruciating pain and suffering?

Trusting Your Living and Dying to the ‘Other’…

The lawyer gave us a form to complete and my niece and I worked on it together. It described a number of possible scenarios and for each there were several possible choices and all you had to do was put a tick in the box that represented your wishes. Basically it says if I have a terminal illness, I don’t want to receive any aggressive treatment. If that situation ever arises I only want palliative care, to be kept comfortable.
(Olive)

It sounds so simple, so easy. All you have to do is put a tick in the box. Yet I am unable to physically move my pen to mark an X in any of the squares. Is it because I have approached this as a solitary project, something I need to complete independently, by myself, without anyone else’s input or assistance? That is my usual approach to performing tasks. I think I am a capable, self-directed person. I don’t like to be dependent upon others. Is it possible that completing a personal directive requires the input of others, that it is not easily done alone and in isolation? Must I put my trust in an ‘other’ in order to complete my own personal directive? Who are those others? As in Olive’s case, lawyers assist many individuals to complete directives. But what expertise do they have in death and dying? Will the resulting document be meaningful, relevant, or useful in a health care context? Why has this document about life and death, natural occurrences, become infused with legalese? Would it not be more appropriate to have these discussions with those whom I am in close relationships with–my family, my friends? What about the input of health care providers? What is their role in this process?

My ex-husband who lives with me has Parkinson’s disease and is, I’ll say this politely, rather stubborn–I don’t want him to be the one making decisions about my body, my health, my death. I also have a daughter who lives close by, but she and I think differently on a lot of issues. I don’t trust her to make the decisions I would want. I do, however, trust my son. I have named him as the person I want to make decisions for me. Even though he lives an hour or so away and I don’t see him really often, I trust him and his wife to do the right thing by me. I have shared my directive with my son and he took it to heart. He asked for a copy and has reviewed it carefully.
(Ida)

In preparing a personal directive, there is an ongoing tension between the notions of trust and distrust. As it is defined in the dictionary, as a verb, trust means “to have or place confidence in” (Webster, 1984, p. 736). In making the decision to prepare an advance directive one is in many ways acknowledging a distrust of the health care system, of family members, of health care providers. We are not confident that the ‘other’ will make decisions about how we want to be cared for that conform to our own wishes. Yet, paradoxically, in preparing a personal directive we are trusting that our written wishes will be respected by others. In choosing an individual to act as our proxy decision-maker, we are explicitly placing our trust in them to carry out our wishes. In earlier times, before the advent of life-sustaining medical technologies, there were few options available at the end-of-life. Ventilators, feeding tubes, transplantation, and so forth were non-existent. It is a desire to avoid the pervasiveness and the invasiveness of these technologies that has prompted some individuals to prepare a personal directive. For these individuals a personal directive is a means of protecting themselves from technological interference which may prolong the dying process. For others, a personal directive may express a desire to be treated to the fullest extent possible given the current available technologies. These individuals, perhaps because of our current climate of health care cost restraint, are concerned that they might not receive adequate treatment, that they might be left to die, or that someone else might be deemed more worthy of treatment. Still others may describe a number of scenarios in their directives in which differing levels of technological intervention are desired. Irrespective of the content of the directive, everyone who completes a personal directive seems to be seeking some control over what happens to their bodies, their selves.

In telling her story, Ida, a well-educated and independent older woman, expresses an explicit distrust of those who live in closest proximity to her, her ex-husband and daughter. In the event that she should become incapacitated and unable to make decisions for herself, they would by the defaults of convenience and accessibility most likely be the ones consulted to make decisions about her life and death. (I wonder out loud who would be asked to make decisions for me, about me, if I were to become incapacitated, critically injured in a serious accident perhaps. Who would the authorities contact first–my parents, my siblings, friends or colleagues, maybe a relative stranger identified in my daytimer? Will it be someone I trust?) In an effort to control who will make decisions on her behalf, Ida prepared a personal directive. In it she names her son as the person she trusts to make the best decisions for her. How will her ex-husband and daughter feel about being excluded from the decision-making process, not trusted to make important decisions about Ida’s life and death? Will Ida’s selection of her most trusted relative impact the relationship between her son and his father and sister? Ida has made me wonder, who do I trust to make decisions on my behalf? Who do I not want to be part of that decision-making process? The answers to these questions are not self-evident. Should I make a list of my closest family members and friends and rate them on some sort of trust scale? Would that help me to come closer to completing my own personal directive? Is trust the overriding consideration in selecting a proxy decision-maker? What other factors might be important?
Ida says her son “took it to heart.” What does it mean to take something to heart? The heart is a symbol of love, of life, itself. This phrase seems to acknowledge and capture the gravity and the seriousness of this responsibility to be his mother’s voice, her advocate, her lifeline. How does one know if something has been taken to heart? Can you hear it in their words, see it in their faces, feel it through their bodies?

Conversing about Living and Dying with the ‘Other’…

My niece was the obvious choice to be my health care agent–we have lived close by each other for much of our lives and now she is the only one of my relatives who lives in Edmonton. We think along similar lines and have always gotten along well together. My niece and I have had good discussions about my wishes and I trust that she will do what is best for me. I think having the discussions and writing down my wishes takes the weight off my niece’s shoulders. I don’t want her to feel burdened. (Olive)

Getting along well, having similar views about death and dying, and geographic proximity all seem to have influenced Olive’s selection of a health care agent. I would say I get along well with my siblings and friends, most of the time, so that doesn’t really narrow down my selection. Death and dying have not been recent topics of conversation, so I am not confident that I clearly know their views on death and dying. This is problematic for me. How does one enter into a conversation about living and dying with the other?

Drawing up these documents allowed me the opportunity to explain to my grown sons that I had thought about what I wanted should I become incapacitated and had written it down. I’ve told them where the documents are filed (I hope they remember when and if the time comes that they need them!). I am in a fortunate position because I trust both my sons implicitly, and so I was able to appoint them as my agents for decisions I hadn’t specifically addressed in the personal directive. (Eleanor)

In completing their personal directives, Olive and Eleanor both used this experience as an opportunity to engage in a dialogue with a few chosen family members about their end-of-life wishes. Both describe the good long-term relationships that they have with the relatives they have selected as their health care agents. What they don’t tell us about is how these conversations transpired. Did the topic come up in casual conversation or was a meeting with their relatives scheduled with the sole agenda being a discussion of personal directives? Did the individual predetermine the content of the directive or was it developed in consultation with family members, health care providers or lawyers? Was their any disagreement between the interested parties? Was their any hesitation by any of the participants about the value of completing a directive? How did relatives and friends react to the discussion–to the idea that there may come a time when their loved one is gone? Now that the directive is signed, will the dialogue continue?

Back to my situation. Let’s suppose I have compiled a list of my most trusted friends and relatives, those with whom I have the closest relationships and get along with the best. What would I do next? How would I open up this discussion about personal directives? Would I call up a good friend and invite her over for a coffee, telling her I want to talk about my future incompetence? Would I phone one of my sisters and say: “Have you got an hour or two, I want to tell you what I want done if I ever become incapacitated?” I picture them both turning to their husbands and, in unison, saying “Dianne’s gone off the deep-end for sure this time.” Or maybe I should discuss this with my parents. Maybe that would be an opportunity for them to tell me how they want their lives to end as well. But no, they have their own remaining elderly parents, six other children and assorted spouses, and seven grandchildren, with more on the way, to worry about. Would they be upset if I did not choose them as my health care agents? Either way, I do know that I don’t want them to be burdened with additional responsibilities. Parents shouldn’t have to contemplate their own children’s death. It doesn’t seem right, or good, or natural. Entering into this conversation is not easy for me.

Lightening the Burden for the ‘Other’…

“I don’t want my children to be burdened with making difficult decisions about what to do with me” (Edmund). “I think having the discussions and writing down my wishes takes the weight off my niece’s shoulders. I don’t want her to feel burdened” (Olive). As illustrated in these quotes, burden is a notion that frequently enters into discussions around end-of-life decision-making. There is a general belief reflected in these stories and the literature that preparing a personal directive will ease the burden of end-of-life decision-making for family members and health care providers (Beauchamp & Childress, 1994; Kelley, 1995; Mendelssohn & Singer, 1994). But what is meant by this concept of burden? Why are end-of-life decisions considered burdensome? How does preparing a directive decrease the burden? In the dictionary, burden is defined as “something difficult to bear physically or emotionally” (Webster, 1984, p. 97). It seems to follow that making decisions about life-sustaining treatment are potentially difficult for several reasons. Perhaps the most compelling factor is their finality. If one makes the decision to shut off the ventilator which is keeping a loved one alive, the outcome is likely to be death. There is no opportunity to go back and make a different decision, to have a second chance to get it right. End-of-life decisions are also difficult to make because they potentially sever long-standing, loving relationships. Deciding to stop feeding your mother, the one who nourished you, could be emotionally heart wrenching. That making end-of-life decisions is burdensome seems readily apparent. But the question remains–how does preparing a directive diminish the burden? Will having discussions about “pulling the plug” with trusted family and friends make it easier to do so when the time comes? Will knowing that this is what their much-loved friend or relative wanted reduce the emotional pain of losing them, the guilt of making a decision in which the only predictable outcome is death? I think the answer is a cautious yes. If I was the appointed decision-maker for a family or friend, I think I would find it helpful to be able to say to myself, “I am doing what they wanted. I am fulfilling their last wishes.” Although the burden may not be eliminated, I can imagine how this might be a healing thought to carry forward in my own life.

Integrating Death into the ‘Self’…

Despite my rational understanding that everyone dies sooner or later, as I was going through the process of completing my directive, I had a horrible sinking feeling in my stomach. I eat nutritiously. I exercise. I’ve never smoked. I don’t take any medication. I shouldn’t have to die. But to complete this document, I had to face the fact that we are all going to die; writing it down on paper verified it in black and white. It was a bit frightening, but I have a very matter of fact approach to life. I felt that by completing this document, I acknowledged that I was going to die. (Ida)

Even in acknowledging or making room for the possibility of death, there is ongoing vacillation, a kind of questioning that repeatedly asks “Do I really have to die?” This, I understand. I have resisted answering this question, because on one level I know the answer is yes and I don’t want it to be. I am not alone in this struggle. Gadamer (1983/1996) tells us that “for every living person there is something incomprehensible in the fact that this human consciousness capable of anticipating the future will one day come to an end” (p. 63). How do I resolve this conflict between my rational mind and my emotional spirit?

I hope that I will be around for many more years–I still have a lot of things I want to do….[But] I’ve had a pretty good life and when my time comes I’m ready to join my wife on the other side. (Edmund)

In Edmund’s story, the belief that something happens or continues after death reveals itself. Gaines (1993), in his novel about a young black man sentenced to die for a murder he did not commit, says of this man’s family and friends: “They must believe [in a God, in a life after death]. They must believe, if only to free the mind, if not the body. Only when the mind is free has the body a chance to be free” (p. 251). Like the friends and family of Gaine’s character, I find it impossible to imagine that all that remains after death is nothingness. I have yet to come to any conclusion about what the alternative is, but I hold fast to the belief that there must be something. I want the opportunity to be reunited with those who have died before me; I want some assurance that those with physical disabilities on earth have an opportunity to run freely; I want to know that young children who have died have the chance to grow up; I want to believe that there is a way that the wrongs committed on earth can be righted. Does this belief in something after death make it easier or harder to face my own death, to prepare a personal directive that describes my wishes at the end-of-life?

Edmund says “I’ve had a pretty good life.” How did he reach this conclusion? Did he complete his own life review before preparing his personal directive? Must I do the same? If Edmund were to say, “my life has been awful,” would this impact his ability to complete a personal directive? Maybe I am not ready to thoroughly assess my own life. Have I achieved the goals I set for myself? (Some, but not all.) Have I treated people the way I should have? (Not always.) Have I made mistakes? (Definitely). Maybe I need to reevaluate my own life goals before I can define how I want my death to occur. Maybe I need to do more living before I can contemplate my own dying. Maybe it is easier if one is older or has been diagnosed with a serious illness to prepare a directive. Maybe one must be nearer to death, to be dying, before you can write a truly meaningful directive. This brings my thoughts back to Jason. If he had not battled with leukemia would he have even contemplated his own death.

Achieving Comfort for the ‘Self’…

When I finally signed the form, I felt a great sense of peace–I felt that I had taken a positive step in planning the way my life will end. I didn’t want my children to be burdened with making difficult decisions about what to do with me. Talking about my death with my children wasn’t easy, but I think we are closer because of it. I hope that I will be around for many more years–I still have a lot of things I want to do, but if something happens, I’m as prepared as I can be and so is my family. I can breathe easier and sleep better at night knowing this. (Edmund)

Edmund describes feeling a sense of peace as a result of completing a personal directive, a bodily sensation of being able to breathe easier and sleep better. What is it about this experience, the preparing and signing of this particular document, that creates such a sense of calm for its maker? Have the makers of directives been lulled into a false sense of security and control about their death and dying or has the process truly deepened their understanding of life and death and brought them to a higher level of comfort and self-actualization? How have they reconciled the concern that if they become incompetent they may be a “different” person with desires and needs that are disparate from those they identified when competent? Did that thought even enter their consciousness? For one woman who cared for her dying husband at home, the issue of personhood was resolved this way: “He responded like a person until the end because we treated him that way” (Pearson & Stubbs, 1999, p. 274).

Several years ago I attended a seminar at the university by two lawyers called “contemporary issues.” One of the topics they discussed was the preparation of a legal document that would allow me to identify an individual who could make decisions for me if I ever became incompetent. It made a lot of sense to me, so I looked into it further. I am 76 years old, you know, I am getting up there in years and anything could happen, anytime….I know there are no guarantees in life, but when I signed the document I felt a sense of satisfaction. I had taken action to prepare a document that would help ensure that I would be well taken care of if I should be incompetent. What more could I do? (Ida)

Ida perceives the completion of her personal directive as an accomplishment, a satisfying outcome of her own actions. She asks, “What more could I do?” Is there a sense of resignation or hopelessness in her questioning? Is it a call for assistance or reassurance? Or is it an affirmation that she has come to terms with her own death and dying to the best of her ability?

None of us know with certainty what death is like or what lies beyond death. It is one of life’s great mysteries. Even the ‘near death’ experiences recounted by some individuals leave us wondering–white light at the end of a tunnel, floating above one’s body, intensification of the senses, of smell, taste, hearing, touch, seeing. Perhaps these are all tricks of the mind, not experiences grounded in reality. Yet, I think some individuals through thoughtful reflection do gain a better appreciation of the meaning of death. And I think some individuals achieve an acceptance of death. As it nears they are not frightened, but instead are comforted by their own beliefs and values surrounding death and dying. I think completing an advance directive may help some individuals to achieve a higher level of comfort, a feeling of peace, a sense of completion. This seems to be evident in the stories I have gathered. For many having some control over what happens to them in life (and in death) is perceived as comforting. I know this is my experience. It is only when I am thoroughly prepared, say for an exam, that I can enter into that exam with some security and confidence. Maybe preparing a directive offers something similar.

Since I was now on my own, I needed to take responsibility for my self. When I signed the document, I had a great feeling of relief and accomplishment. Doing this took away a lot of worry about “what ifs”–I knew everything was taken care of to the best of my ability. (Olive)

Again, the sense of peace and accomplishment is reflected in Olive’s story. Is this process similar or different from completing a will that provides details concerning the way in which one’s material possessions are to be distributed or planning one’s funeral? The obvious difference is that neither a will nor a funeral takes place until the individual is dead, and thus there are no direct repercussions for the individual. With a personal directive (also known in some jurisdictions as a living will or advance directive), the individual who has prepared the document is still alive and will be personally impacted by its enactment. However, there may be some parallels as preparing a will, planning a funeral, and writing a personal directive all demand, on some level, an acknowledgement of one’s own mortality.

I understand that some people feel it’s morbid to create a will or buy life insurance or that kind of thing, but I don’t. I think it’s just sensible to take care of these things while you can in order to save your loved ones later grief and to help prevent arguments. Forms for personal directives, wills, etc. are easily available??you don’t even need to incur the expense of a lawyer. I only had a lawyer involved to put my own mind at rest that everything would be legal. (Eleanor)

Is it that simple? Can completing a personal directive really put one’s mind at rest about his/her pending death? Is this a false sense of closure, wishful thinking? Maybe. Are there any guarantees that preparing a directive will help one to die well? Perhaps not. But does it really matter? Could it be that the process of preparing a personal directive is more important, more meaningful, more comforting than the actual outcome? Are relationships strengthened when discussions about death and dying occur in the context of preparing a directive?

Signing One’s Life Away…

Having talked with several individuals who have completed their own personal directives, I have much to consider. I am not quite ready to “sign my life away” through completion of my own personal directive, but I think I do have a better sense of what has prevented me from doing so and perhaps a greater understanding of what has prevented others from doing so. We know from the literature that in the general population, despite a high level of agreement with the intent of personal directives, the actual completion rate is low. A fear of death, the assumption of immortality, mistrust that others will not act according to their wishes, and a lack of knowledge about the legal process involved in preparing a directive are said to contribute to this low completion rate (Winland-Brown, 1998). In my conversations with individuals who have completed a personal directive, these factors did not present as insurmountable barriers to completion. In fact, mistrusting others acted as a stimulus for completing a directive for one individual.

As health care professionals we are in a unique position to assist individuals as they live out their days before death. We can help them protect their loved ones and their own bodies from pain and suffering. We can work hard to develop trusting and open relationships with our patients and foster similar relationships between patients and their families and friends. We can offer our patients the time and space needed to integrate the reality of death into their own being and to achieve the highest attainable level of comfort. Finally, it strikes me that in order to be able to truly fulfill these objectives, we, as co-participants of the human experience, as individuals whose reality comprises the lived experiences of both self and other, will need to spend time contemplating our own living and dying. If we can meet our patients in a place of understanding and compassion, we may be able to help them to complete their life journeys by dying well.

References

Beauchamp, T. L. & Childress, J. F. (1994). Principles of biomedical ethics (4th ed.). New York: Oxford University Press.

Gadamer, H. G. (1996). The experience of death. In Gadamer, H. G., The enigma of health (J. Gaiger & N. Walker, Trans.) (pp. 61-69). Stanford, CA: Stanford University Press. (Original work published 1983)

Gaines, E. J. (1993). A lesson before dying. New York: Vintage Contemporaries.

Kelley, K. (1995). The Patient Self-Determination Act: A matter of life and death. Physician Assistant, 19(3), 49, 53-56, 59-60.

Mendelssohn, D. C., & Singer, P. A. (1994). Advance directives in dialysis. Advances in Renal Replacement Therapy, 1(3), 240-250.

Pearson, C., & Stubbs, M. L. (1999). Parting company: The caregiver’s journey. Seattle, WA: Seal Press.

Webster’s II New Riverside Dictionary. (1984). New York: Berkley Books.

Winland-Brown, Jill E. (1998). Death, denial, and defeat: Older patients and advance directives. Advanced Practice Nursing Quarterly, 4(2), 36-40.