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“Stages of Dying” : Other Perspectives

by on September 24, 2015

Note: All comments are appreciated, read, and responded to accordingly.  The comments sections for all previous articles have been opened for use.  I will certainly look forward to your comments.

“Experience is a hard teacher because she gives us the test first, the lesson after.” Vernon Law, This Week, August 14, 1960

Experience is a comb which nature gives us when we are bald. Chinese proverb

By now every reader knows I began teaching college classes in Death & Dying in 1973 and have worked intimately in the field since then. I will not reprise that.

My issue here is the tunnel vision of patient-centric  “stages of dying”.  This formulaic concept completely ignores the role and impact of significant others on the patient, the social/familial context of the patient, almost always to the detriment of the patient, and by extension to their significant others.  Herein I will present, from experience in dealing with patients and families, the perspectives of those surrounding and affecting the patient.

DENIAL:  Denial may take many forms.  It may be as simple as asserting that the tests must be wrong.  But denial often arises from issues long preceding a diagnosis; “she’s a hypochondriac”, “he just wants attention and blows things out of proportion”, “she’s never been sick a day in her life”, “no one else in the family ever had that”.

After acknowledgment that the tests are indeed correct the significant other (S/O) may say, “Yeah, it’s bad but you’ll beat it.”  Caregivers generally applaud this attitude; it is their vocation to help patients, not to bury them.  But this should not be allowed to prevent “Just in case” planning.  Thus, while this can be seen as recognition of the reality of the condition, it can also be viewed as denial of its seriousness. And, “Science will find a cure”. This is the beloved mantra of so many adherents to the religion of scientism; the mantra of promissory science.

A patient may be doubtful of his own expressed ability, even intention to beat it, and may wish to discuss appropriate “if I’m wrong” plans.  However, potential confidants such as family or close friends may interpret this as “giving up”, and may rush to say, “Don’t talk like that. You’ll outlive all of us” even as they themselves may have unspoken doubts.  These people may presume that acquiescing to such a discussion with the patient may signal lack of affection, impatience to get this troubling situation over with, or perhaps even some lapse of faith.  Thus, the patient may find himself displaying the profile of someone who is “putting up a good fight”, but in fact is only in retreat into his own lonely world.  It is vitally important to help the people interacting with the patient to realize that denying what the patient is coming to accept will not empower the patient to live longer; it will only ensure the patient dies personally alone. It is important for S/Os to see themselves as part of a group that must deal with the process and the aftermath.  

ANGER:  Anger signals that the diagnosis has been accepted.  After all, why be angry over something that is not true or does not apply?  Anger may also signal at least a fear that some blame might be valid; anger is often a deflection of blame, a need to be angry “at” something or someone.  But again, there may be a disjoint between the S/O and the patient.  Where there is a history of questionable or poor health practices, there may by a litany of “I told you so’s” for the patient to hear.  The reader will recognize this as a common application of Bayes’ Theorem; inverse probability, deriving probable cause from apparent effect. Obviously unhelpful to the patient, this may be yet another source of alienation coming from the people who should be of most support.

Anger also brings out other issues.  “How could she go and get sick on me?” “He said we would travel when he retired, and now he can’t walk across the effin’ room!” The patient is thus made aware he or she has “let someone down.” Of course, this is a formula for encouraging a patient to withdraw into depression.

The hard mission now is to acknowledge the causal probability, as just that, and move forward into the era the patient now has left with the family.

Anger also erupts within the family when:

  1. Some family members are encouraging the patient toward acceptance while others are holding to various forms of denial or “fight it” positions.
  2. Some family members are perceived to not be assuming their fair share of the caretaking.
  3. One or more family members presents a conundrum, such as: “Jane has been clean and sober for 7 months now. At some point we have to tell her that her father is dying, but how and when? And how do we ensure she doesn’t show up at the hospital or funeral home drunk and causing a scene?”

BARGAINING:  This phase is most commonly seen when a regimen of therapy has been prescribed and is accepted as valid by the patient.  Early in my 23 year career with the Federal Centers for Disease Control & Prevention I discovered and adhered, whenever possible, to a simple principle: one cannot take something away without giving something in return, especially when what is being taken is enjoyable. 

Within the scope of this piece, most bargaining falls within the area of slight modifications to the therapy protocol so as to allow for special events.  While chemo-therapy has recently greatly reduced its concomitant toll on the patient, it nonetheless can leave the patient in less than optimal shape for a few days post treatment.  Also, chemo-therapy is commonly provided on a fairly strict schedule.  A patient who has a significant emotional investment in attending a certain family event, or taking a certain trip, may well fare worse through the cancellation of those plans than through the postponement of a scheduled session.  Cooperation at an early stage also sets the tone for enlisting the patient as an active and in-control partner for the duration of the treatment. And this is vital.  Of the many trip levers leading to depression, a sense of loss of control is primary. Failure to grant bargaining power to a patient tells the patient he is irrevocably trapped and must surrender all personal autonomy.  When a patient asks to delay a chemo session in order to attend his daughter’s college graduation he will likely fare far better in doing so than in missing the graduation in order to adhere to the schedule. S/Os must be made aware that chanting “But this is what the doctor says” alienates the patient from both the doctor and themselves. They should have little or no role in the bargaining relationship with the doctor beyond an agreement to immediately assist in getting the patient to appropriate care should an emergency arise during the event, such as a trip, bargained for.  

DEPRESSION:  Of all the “stages”, this is the most difficult and perhaps the most dangerous.  Clinically, it is often difficult to assess whether the depression stems from the diagnosis (situational) or whether it has been a long term underlying condition (chronic).  Everyday life provides ample opportunities to develop and hone tactics to mask our own depression, especially when we are tired of hearing other people telling us to “snap out of it” or telling us to compare ourselves to other people who, in the speaker’s view, have it worse.  A depressed person sees comparisons as irrelevant, and admonitions to snap out of it as ignorant orders which only further the sense of loss of control over one’s own situation and the inability to connect with anyone who understands.

A further confounder is the realization that there can be a fine line between depression and realism.  Many matter of fact people, whom we would socially define as frank and clear headed, view therapy associated optimism as “whistling past the graveyard”.  While working in a funeral home I did a routine pick up at a nursing home.  As my partner and I were wrapping the corpse to lift it onto the gurney, the still living, but barely, roommate caught my eye and said with a smile, “Well, I guess you’ll be coming for me one day.”  What was I to say?  “No, you’re going to live forever”?  She was right, in a categorical sense if not in a personal sense.  Someone would come for her one day.  On home leave before departing for a two year assignment to Africa I attended a small neighborhood party which included a highly respected educational administrator who had been a mentor to me.  Although consumed by intestinal cancer, he came over and shook my hand with a smile saying, “We won’t be seeing each other again, but I hope life delivers to you all the goodness I believe you deserve.”  Point blank realism. Delivered with a smile.

Again, the phrase “make someone feel better” comes to mind.  “Make” is the operant word. What do we mean by it? Why do we need to do it?  Former hunters I have known have often said they were sickened by the struggles and cries of wounded animals.  They hastened to “put them out of their misery.”  Do the behaviors of a depressed person trigger the same feelings in us?  Are we “helping” only to brighten our own surroundings?  Do we ban the symptoms of depression in someone else because they trigger discomfort in ourselves?

Discussions during this phase often center on “quality of life”.  This is an obviously subjective concept.  As I’ve aged I’ve noticed what appears to be a certain degree of empathy in me.  Having ruled out mini-stroke, I accept it may be there.  And herein lies a danger for the caregiver.   

Some U.S. States are following Oregon’s lead in trying to determine parameters that would allow for assistance in the voluntary closing of life. Internationally, the Netherlands has led the way and several other countries are following suit.  And this brings us to the last of the stages, or phases: Acceptance.

ACCEPTANCE:  As must be clear from the immediately foregoing discussion,  even Acceptance can be fraught with interpretational minefields.  The idealized vision would be of a patient metaphorically folding his hands over his chest and adopting an angelic smile.  But storybooks are just that.

Most patients are enmeshed in a matrix of significant others and caregivers.  We must examine those persons to see if, for example, they interpret a patient’s acceptance as “giving up the (spurious) ‘Will to Live'”.  I specifically inserted “spurious” there to signal the point that the Will to Live is largely, if not entirely a cultural fiction.  In addressing the fallacies of “common wisdom” about so-called human universals, William James, usually noted as the Father of American Psychology, had a favorite response: “All it takes is one white crow”. 

As it turns out, we have a flock (“murder” is the ornithological term) of white crows.  One has only to examine case files of suicides and attempted suicides to find that many were not greatly connected to life to begin with.  The many participants in High Risk activities, from sports to drugs to a variety of behaviors call on us to classify them.  The very common practice of filling out Directives, including Do Not Resuscitate, prior to surgery is possibly another white crow.

So the simple transition in which a person goes from a dedicated chemo-therapy patient, “a fighter”, to a settled and calm person trying to enjoy what time he has left is not necessarily evidence of losing the will to live; it can merely be a peaceful recognition of the transience of all things, including life.

But ENTER the cast of caregivers and S/Os who press the patient to fight on.  Perhaps they cannot admit to “medical failure”?  Or, perhaps it’s only the show of cheering the team as it loses the game.

One of the more telling realities of Acceptance is the very common fact that patients often arrive before S/Os and even professional caretakers arrive, if they ever do. Thus, we frequently find that hospital cleaning staff and other lower level functionaries are much more aware of a patient’s true feelings than are his professional caregivers or his family.  The patient opens up to them, seeing them as fellow humans with no professional or familial roles to defend.  They can speak freely. A relevant statistic appears in Being Mortal by Atul Gawanda  MD.  Somewhat over 2/3rds of patients on chemo-therapy or other serious interventions are on them only under pressure from their families, not because they themselves elected them.  The people with no stake in the outcome, the cleaning staff, the crew providing transportation to and from treatment, become the ones to know this because so many patients feel a deep need to be honest with someone.    

And so we return to those family members and wonder if their sorrow and concern is completely genuine.  Perhaps the only assistance they need is in coming to terms with and owning their own desires, often different from those of the patient. 

A skilled counselor, acutely aware of reintegration dynamics before or after a death, can be the guide.  A skilled and experienced counselor can listen carefully and read the signs before problems develop, especially if this counselor understands the holistic process unfolding.  It is most certainly not a simple matter of measuring a patient against a list of presumed “stages”; it is, in a very real sense, grasping a matrix composed of past, present and future all at once.

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6 Comments
  1. Excellent! The whole time I was reading it, I was thinking about my brother, Billy. When we learned he had cancer, he and I talked about it. I told him, “I’m not saying you aren’t going to make it, but…”, and then I told him about my NDE.

    He entered a regime of chemotherapy, which made him nauseous, but also made him feel better once that had passed. A test was scheduled to determine how far the disease has spread, and his whole family was at the hospital when it was done. My mother was “still in denial”, but Billy had no such issues. If the cancer had still been localized, they were to surgically remove it immediately. We all settled in for what we hoped would be a long day.

    Billy was realistic. “I’ll know when I wake up,” he said. “If I have a big cut I’ll know I’m going to live. If I have a small one, I’ll know I won’t.” Sadly, our wait was short, and so was the incision.

    He went through one more set of chemo, but without hope, the illness it created was unbearable. He made the decision that he was done, and that he would live whatever was left of his life to the finest of his ability. That he did, and the rest of us supported his decision and helped as much as we could to see that the rest of his life was a good one. When he died, he was at home surrounded by family. I think we did it as right as we knew how; our only regret is that he is no longer with us.

    Thank you for writing this. I hope that it, and its message, are seen and received by lots of people. I especially hope it finds the ones who need it most. Rose

  2. Thank you so much, Rose. It would be hard to put into words how fortunate your brother was to be in such a family. And, though your family seems not to have had them, I know you can visualize some of the problems I described. For most people dying is a holistic process, and many families realize this too late.

    • I didn’t mean to imply that my family had no issues with my brother’s death, only that we managed to either deal with them, or at least keep them from him as much as possible. We did what we could to make Billy’s last months happy. Each of us had our own way of dealing with the emotional cost of losing someone special to us. When it was done, I wrote and delivered his eulogy. There were tears, but also laughter. It was the least I could do.

      • Thanks, Rose. Most families have issues. Few acknowledge them or deal with them humanely. Giving a eulogy must be a tough thing to do. I’ve never done that.

      • When my father died (23 years ago), he was eulogized by a relative stranger. My mother had asked me to “write some words”, but I didn’t understand what she meant. I swore this would not happen to my brother.

        Writing the eulogy was easy, delivering it less so. When I looked up from the paper I was reading to see nods of agreement, or heard chuckles at some funny memory shared, it was all worthwhile. I hope someone will do that for me some day, but not too soon.

      • Agreed. I’ve been to funerals in which the person giving the eulogy had no personal knowledge of the deceased, and was only reading a standard script. In closed casket services I fantasized that the casket was empty.

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