Death Closure

Posted by on Feb 20, 2014 in End of Life, General Medicine | 22 comments

Death Closure

I remember it was raining outside when I told Ester she had metastatic stomach cancer.  She cried, as her son sat silently holding one thin hand in two of his.  After a while, she asked, how long did she have to live?  I explained it depended how well the chemotherapy worked.  She smiled gently, as one humoring a silly child, and said that there would be no treatment. After 81 years of good and bad life, there was no reason to battle the inevitable. Ester went home, on hospice, and quietly lived the last two months of her life.

Elisabeth Kubler-Ross, M.D. proposed that there were five emotional phases to coping with fatal disease. First, denial; it must be a mistake. Then anger, fight or flight, there must be someone to blame.  Sometimes, there is bargaining, try to make a deal; perhaps God will trade for more time.  Many patients suffer depression, as hope is hard to maintain.  Finally, the critical stage, acceptance.  There may be an element of calm; a final understanding of one’s mortality and a peaceful acquiescence to reality. Death Closure.

No one goes through these stages in the same way or in the same order, and not everyone goes through each stage at all.  Emotions mix and match and members of a family are rarely at the same place in the grieving process.  Often patients do not get beyond the first two stages and many die astonished and angry.  Relatively few patients fully accept what is happening.  Rarer still are patients such as Ester who move directly to acceptance, avoiding the anguish of the other stages. Why not?

Every person more than seven years old knows that life is terminal. Nonetheless, most people do not emotionally prepare for what is going to happen. Instead, it is argued, we do the opposite, creating illusions of immortality that make it even harder to cope with dying.  This failure causes deep pain for anyone who is stricken with a deadly disease, such as cancer.  This failure causes deep pain for all men.

In his 1974 Pulitzer Prize winning book, Ernest Becker, Ph.D., theorized that the Denial of Death is responsible for most of the horror created by mankind.  Becker proposed that all men and women spend their lives building a personal myth to find meaning and traces of immortality in daily existence.  Whom we love, what we do, what we believe and essentially every decision we make are influenced by our need to deny death by giving eternal purpose to our lives.

Like Kubler-Ross’s stages, when this coping mechanism is compromised we respond with anger, ethical compromise, and depression.  Becker believed that if the conscious and subconscious defenses that we use to deny death are threatened, we respond with intolerance, prejudice, jingoism, violence and war itself.  Anyone who is different from us, in any way, threatens our immortality.  Becker doubted that homo sapiens was a viable species, and thought it was likely that man’s very fear of death would result in his ultimate destruction.

Kubler-Ross was concerned about the grief one person experiences when diagnosed with an incurable disease.  Becker taught that mankind, as individuals and as a whole, goes through stages of grief on a daily basis, the result of threats to our mortal character-armor and that we may never get beyond anger in our defense of that denial.

The crucial question, on which the survival of our species may depend, is what Ester, and others like her, can teach us about death closure?  Can we learn to accept our mortality, even when the actual time and cause of our demise is hypothetical?  Can we cope with dying when we are healthy and likely have decades to live?  If Becker is correct, that the source of the pain which man inflicts upon each other, is a projection of the denial of death inside every one of us, then coming to death closure not just as individuals but as society, might be key to preventing the distrust, isolation and massive destruction, which harms so many, everyday.

Hospice and Palliative Medicine teaches us to seek quality of life, at its end, by open and realistic conversations about death.  Man has the internal strength to peer into the abyss and not burn.  Such conversations, using the same open and realistic communication, starting when we are young, might bring quality and peace to all life.  Perhaps this is the broader mission for Hospice, healing by teaching us to recognize the hold denial and fear has on all men and nations.   Then, Palliative Medicine would not be about dying; it would be about saving mankind.

22 Comments

  1. That many can’t cope with dying while healthy is probably why some people vanish from the lives of people who are diagnosed with cancer. I’d guess that with others someone in their family has died and they had a lot of pain over that, don’t want a repeat and so “run” (emotionally disconnect from us) while they can to avoid future pain… (heck I have had counselors I have tried to talk to about this, including the one employed by the cancer unit, have trouble with this).

    My father committed assisted suicide. As a family we did a lot of grieving in advance of his death. I also found, as did immediate family members, that to come to terms with suicide – choosing to die – one has to change how one thinks about death. It puts suicide as an active choice to reject in future decisions, rather than as something that is “untouchable” not even to be considered (and all of us resented this “change” because it makes some decisions harder – this is probably why suicide is higher in families where someone committed suicide). A barrier of some sort had been crossed and to deal with dad’s death we had to remove the barrier/see beyond the barrier on an emotional level – something none of wants to do as it is painful. Several other relatives have stopped cancer treatment and then died- they seemed at peace with their decisions. Another had chemo until the bitter end (her choice as she was not going to “give in” to dying).

    I am on my third major cancer, one of which has no cure. It takes a while to get a grip and figure out how to keep living while dealing with a cancer that has no cure. The first 18 months of that were rough emotionally in ways dealing with the other two cancers were not. I am not entirely sure that all oncologists understand that either. I was not especially a “good” patient at first I was in so much emotional pain and my oncologists (I had two cancers at once) were incredibly intolerant of anything other than compliant, good patient behavior. When I was unable to handle frustration very well because I was so emotionally distressed I was not met with compassion, instead medical people behaved as if I was being a jerk on purpose (and tears or showing much emotion of any kind at all was considered being a jerk, not just being overly frustrated with the inevitable screw ups that happen when you go for chemo).

    I have yet to have an oncologist who “gets it”. I had to really push to find out what actually kills you/ of what you actually die of with this most recent cancer – he kept not answering that question and saying not to worry about that, there will always be more and newer treatments… How the heck people can choose to go into oncology or specialize in anything else where patients have a higher odds of dying without dealing with their own issues with what you are calling “death closure” is beyond me. He couldn’t even discuss death with me. Geesh. And he works at a major NIH comprehensive cancer center as the clinical director.

    It seems to me that either medical school isn’t teaching much about this or that the way they are teaching this is not reaching many people (or how medical people are socialized about this in the profession). While people going into medicine are just that – people like the rest of us – it seems to me that more effort needs to be spent helping these folks address their own fears, overcoming these barriers we create so we can live knowing we will die, and how a patient dying will trigger their own buttons on the topic…

    I know this is slightly off the track you were headed down with your post… sorry about that.

    • You have managed to write the material for at least two books (and probably a PhD dissertation) in one comment. I think your insight into the need to view life differently in order to cope with suicide is remarkable. I wonder what that idea says about the increasing acceptance of physician assisted suicide? Is society changing how it views death? You are not doubt correct that we need to give medical caregivers guidance and permission to come to terms with their own fears about mortality, so that they can better walk-the-walk with their patients.
      Thank you for your profound thoughts,
      jcs

      • Feel free to pass on to anyone you want anything from this post and tell them they are more than welcome to “steal” the idea, use it in class, develop it further and study these things. Doing that can only help…

        WIth respect to MD assisted suicide – what I think is that there are going to be a lot of MD’s having their own emotional crisis on a very personal level over this unless they manage to figure out how to insulate themselves from a more active way of death and dying… I’s also guess that MD’s will prefer the “one step removed from the active killing” versions (stopping machines, giving an Rx for a drug patients can fill or not and take or not on their own) rather than injecting the high end of normal dose of morphine (to “stop the pain/keep them comfortable”) to a patient who has just had their respirator pulled (knowing it will reduce respiration function and speed death) or injecting a lethal dose of something else. That way they have an emotional cushion from the actual act of killing. I also think they will refrain from using the word killing, thinking of it instead as a patient choice to die. Again, a choice of words that puts a protective layer between the act and the consequence.

        While you are not immune from having to deal with the consequences of patients dying as an MD (why else would we have so many MD’s who are emotionally distant from patients if not to protect themselves emotionally?), I am not so sure some of the coping mechanisms MD’s use are going to survive a lot of assisted suicide – especially the more active assistance.

        A few of some other the other questions I have are: If an MD has actually had to emotionally deal with suicide in the same emotional way that family members have to, and comes out the other side in a similar manner, does this then mean that they will be more likely to, for example, chose ending treatment when it is likely futile? Will they be more likely to explore patient desires for assisted suicide or ending treatment? Or will that have been so traumatizing that they are reluctant put themselves in that position again? Will their suicide rate be higher personally due to having gone through this (as it is for family members of someone who has committed suicide)?

        Or, for example, if they were an unwilling participant due to living in a state where it is legal (my father died when it was illegal everywhere) will feeling pressured to participate will it cause them to run emotionally from their dying patients and/or be more resistant to ending treatment, etc.? Will they be angry and resentful and not deal with it in the same way as someone who didn’t object?…

        Seems to me this field of study needs a lot more study and our society’s taboo over suicide isn’t going to help that happen any time soon. Lots of opportunity and not just in the field of psychiatry.

  2. I love this one. A must read that I will share!

    • Thank you. That means a great deal to me.
      jcs

  3. The depth and breadth of your writing takes my breath away. The fact that you’re also a practicing oncologist with all the demands that entails is remarkable. Today’s essay is one everyone should read and keep in their daily consciousness. Thank you.

    PS I’m sharing it on FB.

    • I am honored.
      jcs

      • I agree with Janice. You and your writing are quite extraordinary.

  4. Do you not believe in God or the afterlife? I have known people,who because of their faith & salvation, have faced death without fear.

    • That is a really important question. Personally, I do not have a conventional view of God and do not use it to cope. On the other hand Becker wrote extensively that different views of the after-life and God were a prime driver of the evil man does to one another because if someone else, even a little bit, does not believe what you believe, than it threatens your concept and reassurance about immortality.
      In a bizarre sense, two rights make a wrong.
      jcs

      • My dad, who was a minister, said that some day he was going to write a book called “The God Fraud… all the mean, nasty and evil things done in the name of religion” LOL

    • Religious beliefs do not mean that people feel ready to die or don’t fear the act of dying… My father, who was a minister his entire adult life, said upon requesting assisted suicide (well had me track down if the facility would allow it, something I resented being asked to do – we all had to give our permission and I didn’t exactly do that – this was pre cancer for me – that while I didn’t want him to die it was his life to do what he chose with it and I knew he had discussed this years before he was in a position to need/want to make a choice like this), that he no longer knew for sure if there was a heaven or a hell but he was ready to die anyway. Of course one of my sisters and my mom both told him that if there was a way to come back and let them know, please do so LOL.

      I don’t think religion is always the insulator we think it can/would be. And no, he was not, at that point in time, a religious “drop out”. Rather (and this is my personal opinion based on conversations we had had over the years) he had made a decision several years earlier and had crossed that line in the sand he had drawn for himself (he died of post polio complications – um well I guess he died secondary to them). Knowing if there is a heaven or hell, an afterlife… is essentially unknowable by first hand experience. Rather we believe based on other things. My father was articulating that he didn’t know for sure anymore but that this didn’t matter at this point in time. Religion was irrelevant here, rather than being on the side for or against afterlife considerations with respect to fear, or lack there of, of death.

  5. Hi, a dear French friend told me that I was beyond Kubler-Ross, when I told him that I was diagnosed with a rare aggressive incurable cancer that’s in the worst place. The oncologist and Nurse Navigator expected me to act in certain ways, and I had immediate problems because I didn’t.

    I’m a butterfly that lives for that day, without worrying about tomorrow. I also can travel from Central Mexico to Northern California. The only thing I was worried about was pain control, and I was called a dope addict. I wasn’t asking for anything that day, and they did tell me that this is one of the most painful cancers.

    I was disturbed that I couldn’t expect much help or comfort in palliative or hospice care in this system and state. My liver and kidneys won’t be affected too much, because the nodules will be tunneling through my brain until one finally hits a vital gland or brainstem. The only response to this is “Oh well, I could fall off of a ladder, get shot by the cops, struck by lightning, get Listeria, Hantavirus, and this is a plague state filled with drunk drivers and lunatics. So I’ll deal with this if the cancer reaches the pain part.”

    After this long running fight, where the oncologist refused to release me from his care, and the clinic wouldn’t assign me another one, I finally have a good team in and out of oncology.

    I kept telling them that my rage wasn’t caused by a Kubler-Ross stage. That I wasn’t trying to do a Kubler-Ross negotiation to get a better result-I needed a doctor that wasn’t an F-ing idiot with a God complex, and a Nurse Navigator that would remind the doctor to order basic blood work, and wouldn’t schedule 3 appointments at different facilities throughout the city at the same time. The Nurse Navigators run past me, the counselors avoid me.

    My primary care physician ordered the blood work. He asked , “Why, oncology does that?” I told him that it was my birthday, and the government mandates a physical for my birthday, and I want you to order complete lab work, and it was time for my thyroid to be checked anyway.

    I officially had a year of remission. This month, it has become legal in this state for a physician to assist in the death of a patient. That makes me feel more hopeful. Meanwhile, my French Medic sans frontieres and I talk about butterfly things-when we were younger, not in our 70s, classical concerts, art, astronomy, genomes, our dogs, and the unimportant things that make life worth living.

  6. My problem with Becker’s concepts from “The Denial of Death” is that there is no accounting of the same “horror” for much the same basic reasons between human to human as is found between animal to animal, insect to insect or even cross species for that matter. As humans, we tend to believe that those we call “lower life forms” have no concept of death to deny. Yet, these lower life forms will fight, maim and kill for much the same reasons as humans…territory, water, food and other resources, as well as, real or perceived threats and even greed in a fashion…you have something I want but don’t need.

    Nor does he seem to take into account the death before dishonor, death before capture, death by unwavering loyalty that has been prevalent in many long-lived (particularly Asian) cultures. There are also those who believe that some of us procreate as a form of immortality. Do lower life forms do the same or do we just pass this off as “instinctual behavior” and preservation of the species?” If these are taken into account then the human race must have a core (instinctual) conception for death as well as a learned one. I would conclude that much of what is touted as our “denial of death” has been learned and cemented in our current culture over many, many years.

    I don’t believe that any of us can truly say we are 100% in denial of death. As you said, we all know we are going to die. Arthur C. Clarke once said that we’ve “learned to die” and that we need to “unlearn” that. Wouldn’t it be something if it were that easy?

    Just because a person doesn’t like death, doesn’t want to be around death, wants to insulate oneself from death, wants to postpone death as long as possible (one’s own or that of another) doesn’t mean they’re in denial…they know it happens and it will happen. I feel it’s more of a “psychologizing” (just made that up) of one of our many normal responses to the uncontrollable to bring it under control, and particularly, the control of someone who can get paid for it. We humans, for the most part, have a penchant both for control and the accumulation of wealth. None of this includes religious beliefs that open up a whole different set of issues around death and Becker’s philosophies.

    It is interesting to note that Becker completed the Denial of Death as he himself was diagnosed (and perhaps suffering earlier from) colon cancer. He died in the year following its publication.

    One other thing of note, and probably only I would find interesting, is in your last paragraph you said,

    “Hospice and Palliative Medicine teaches us to seek quality of life, at its end…”

    but then ended with

    “Then, Palliative Medicine would not be about dying…”

    Why did you exclude “hospice” from that last thought. Freudian slip perhaps?

    • Interesting thoughts. Becker believed, as do I, that man caused suffering in his fellow man, goes far beyond simple competition for survival seen in other species. At its extreme, it is hard to argue that most prejudice and violence is about proving who is most fit. When we wipe out entire nations and their achievements through war, we set back the species. Clearly working together to solve problems is a far more efficient use of resources then burning everything to the ground, as we so often do. For a highly intelligent animal we often fail to find the best, most compassionate or altruistic solution.

      I think Becker explained sacrificial death (death before capture…) fairly well, by noting that denial of death is not just about individuals, but about entire cultures. We are willing to sacrifice ourselves, die for even the most horrible leaders, because we believe in the concept of immortality for which they stand. You fight not just for the man next to you in the foxhole, but for the figurehead who lead you there.

      You are of course correct there are levels of acceptance and denial. To accept death does not mean you do not fear it or welcome it. However, Becker believed that much of the time at a subconscious level we make decisions without realizing the affect of denial. Clearly Ester had figured it out. How about the rest of us?

      jcs

      • I see what you’re saying but ants will wipe out any termite colony they find whether in competition for the same food source or not (although to be fair, ants usually take the termites AS a food source) or predators will kill any and all competitors who simply enter their domain (just passing through…didn’t see the sign) whether they take prey or not.

        But aren’t prejudicial violence, saber-rattling which ends in violence, the strong preying on the weak just because (they are stronger) and sacrificial death all really nothing more than just the “jingoism” you mentioned? And all of human design?

        I believe it is more about control than denial, individually and collectively. From birth to death most of us strive to control what happens around us…the infant crying and parents come running is usually our first instance of control. Loss of control is by and large our biggest fear because without it, what do you have?

        I think the Ester’s of the world have relinquished control of their immediate environment and moved on, perhaps, to a higher level of control(ling the unknown).

        I used to be extremely fearful contemplating my own death. I’m not anymore (and for a multitude of reasons that make sense to me) yet many would say I’m in denial. I’m not, I’ve just decided that when it comes, it comes and if there is something else then I have a ton of questions and I will expect answers (another, but higher level of controlling my environment).

        This assumes that there is consciousness after death and, if not, I am going to be one ticked off ball of energy.

  7. 48 hours after the phone call from my parents delivering the news of my 73-year-old mother’s terminal diagnosis (stage 4 lung cancer with metastases to the brain), I resolved that while there was nothing I could do to keep her from dying, there was plenty I could do to help her keep living — fully and joyfully. From the moment of that epiphany, my self-appointed mission was to inject living into my mother’s dying.

    Her terminal diagnosis did not carry a termination date, and so my family decided to welcome each new day and assume there would be many more new days ahead. We found many ways to live fully and joyfully, even while anticipating death. It started with a mindset, I think. I did not want my mother to stop living while she waited to die. We looked forward to each day as one that would bring new possibilities rather than as a day that would bring my mother one day closer to her death.

    She lived a year and a day from her diagnosis, and it was a year filled with life, love, and laughter. I relived and recounted this wonderful (though also heartbreaking) last year with my mother in a memoir that poured out of me in the weeks following her death in 2009, and since then I’ve also been quite vocal, in print and other media, as both an advocate for hospice (which made the unbearable bearable) and as a witness to the fact that a terminal diagnosis does not and should not terminate living. Here is a link to a short “tips” article (focusing on ways to deal with terminal illness, particularly from the perspective of family members/caregivers) that may be of interest or help to some who follow your fabulous blog, Dr. Salwitz: http://caregiver.com/articles/print/a_terminal_diagnosis.htm. And this BlogTalkRadio interview with Dr. Jeanette Gallagher (“Closing Your Life Chapter with Elegance, Grace, and Love for All”) may also be relevant and illuminating: http://www.blogtalkradio.com/dr-jeanette-gallagher/2013/12/05/closing-your-life-chapter-with-elegance-grace-and-love-for-all . ” The conversation covers reactions to terminal diagnosis, strategies for embracing life while anticipating death, and all the reasons why hospice represents such a gift (minutes 34-40 for hospice section).

    Families who are unaware of the goals of holistic and compassionate care options such as palliative care and hospice may not be allowed to reap their benefits. This is not acceptable, especially if patients conclude that the only option for relief from suffering is suicide.

    • First, please accept my condolences for the loss of your mother.

      No offense to you, your book, Dr. Gallagher and her show/book but I listened to the talk show you mentioned and I heard nothing explaining how hospice is a “gift.” Neither here nor on the show, as is almost always the case, very few ever mention that hospice comes with a price tag. Not in terms of dollars but in the inability to receive comfort care, palliation of symptoms AND pursue curative measures under Medicare rules (applicable to all hospices). There is now an exception to this if you are able to find an “open access” hospice in your area that you can qualify for and that offers treatments pertinent to your terminal illness.

      I do not understand why the public is bombarded with all the “potential” pluses of hospice without any acknowledgement of the negatives and leaving those for you “to be surprised with” should you have the misfortune of receiving “bad” hospice care. But we’re told not to talk about our bad experience. No one wants to listen, anyway. No one cares, ultimately, and the “couldn’t happen in our hospice” syndrome is usually in effect. But, yes, it could happen to anyone in any hospice at any time. It’s simply the luck of the draw on who you get to provide your personal care.

      Then, what happens to the people who’ve suffered and died and their families who have no way of resolving what they experienced? No one can make it right or make it happen again the way it should have happened in the first place or explain any valid reason why this should ever have been allowed to occur. In most cases if you talk about it, you will be labeled as grieving (as though you’re insane) or so ignorant that you were just unable to perceive all the “good” that hospice (and its angelic IDT) was trying to do for you. A particularly common comment is “Well, that’s not my experience with hospice” as though you’re lying about yours.

      If you actually try to do something about what happened through legal or legislative channels, you may receive a threatening letter from the hospice’s attorneys saying they will press charges and sue you if you even dare discuss what actually happened (you were there, they weren’t) with anyone for any reason at any time (even the State oversight agency). My own letter states (the cocky) we (the hospice) have allowed you to pursue this matter “to no avail” as a legitimate reason (no action taken yet) why I should be barred from discussing it or pursuing my still open, nearly 5 year old complaint.

      So why is it right that we should only allow the good hospice experiences to be told in stories and advertising, etc? Why do we suppress anything that’s bad? Why do we suppress anything that could prevent the bad from occurring? I had this shoved in my face again when I attended a “meet the candidates for state assembly” session this past Saturday. I wrote my question about Home Health Care and End-of-Life Care (didn’t even say hospice) and turned mine in FIRST. The moderator (a county supervisor and chair of the County Commission on Aging) read it and moved it immediately to the bottom of the now larger stack. Now keep in mind that this was a meeting designed for the senior population about senior issues and candidates who were replacing a termed-out so-called “champion” of senior rights. Home Health and Hospice are predominately used by seniors. Here was my question:

      Home Health Care and Home End-of-Life care can discharge a patient at their discretion for either

      1) their “perception” of any patient refusal as a “compromise to their commitment to quality care”
      or
      2) “Discharge for Cause” where they define the “cause”

      There is no requirement to disclose these to the patient at enrollment. There is no requirement that there even be a WRITTEN policy in place. There are no means for “timely” investigations before the patient likely dies or rescinds the service.

      Were you aware of this and what would you recommend be done to deal with these issues?

      My question was no longer than most and shorter than many…particularly one (that was asked) that went on and on and didn’t even end up with a question. I didn’t even include that patients who are Medicare eligible and want to contest a discharge are eligible for a 3-day expedited review with a QIO (Quality Improvement Organization) and have to be informed of such…but not by hospice! Why, then, was my question suppressed?

      Hospice, per NHPCO’s 2011 records for instance, discharged almost 17% of all patients “live,” knows why they individually were discharged but fails to report it even where required. Note: “notoriously fails” was used to describe this by both the state oversight agency and the state hospice association in this context. With the onslaught of the “Silver Tsunami” ahead, this discharge percentage could get larger or even at the same percentage would represent a larger number of people. One of my own “peeves” is that many, many hospices claim and/or will tell you that “you could even get better under our care and leave hospice.” Ask any hospice that tells you that to give you their statistics on how many people do and see what answer you’ll get.

      Why then are the bad experiences in hospice always relegated to rare or suppressed?

      I heard something today that I thought was particularly touching. It wasn’t said in a positive sense rather pointing out that each of us are just one of many. That statement was:

      “You are not a special snowflake.”

      We are all special and unique in many ways. Would you tell a child who feels he has no friends that it’s because he is not a “special snowflake?” Would you tell a spinster or life-long bachelor who never found “the one” that either wished to marry that it was because they weren’t a “special (enough) snowflake?” Then why do we insist on telling those who’ve lost or are losing a loved one under improper to horrific circumstances that their case is rare and shouldn’t even be acknowledged let alone guarded against from re-occurrence? Cannot the dying still be a “special snowflake” to someone? When you’re dead is all your specialness revoked?

      On top of that, we extol the virtues (or perception of virtues) of those who committed such irresponsible, irreversible actions and ongoing damage to families. Is it really because what some say…”Well, they were dying anyway?” Hospices are routinely described as “more good than bad.” They are also routinely described as a “gift.” Mine was, irrefutably, no gift! Yet, ALL hospices appear to qualify for that status no matter what they’ve done and don’t you dare say anything bad about them.

      Even if only one person, in the entire world…a decidedly rare situation, felt that only one other person (now dying or dead) was their “special snowflake” should anyone have the right and audacity to minimize their feelings and their story to “rare” and exclude it just because there are a larger number of better ending stories? How cold have we become if this is now how we judge?

      • Oh my! Quite a response, and certainly not one I expected nor, I believe, one that actually responds to my message (or to Dr. Salwitz’s original message, for that matter). I wrote from the perspective of a grateful daughter whose hospice experience was positive and who is concerned that too few people know what hospice is while too many think it’s something it isn’t and, as a consequence, too often it is not even considered as an option. My comments (in the post above and in my interview) were offered as a personal perspective, NOT a policy position paper!

        I believe I was quite clear in my interview about why my experience was positive and why/how hospice was a gift to my mother and her family, so I’m not quite sure how you missed that (unless you did not want to hear it). I certainly never claimed (anywhere) that everyone’s hospice experience is or will be wonderful (I am not naive enough to believe this), nor did I tell anyone “not to talk about [a] bad experience.” In spite of what you seem to have concluded and chose to imply, I would never discourage someone who had a bad hospice experience from talking about it and doing whatever he/she feels is necessary and appropriate to “fix” whatever is broken — locally or system-wide.

        My wish is, simply, that everyone could have as positive an experience as my family did. Raising awareness of palliative care and of what hospice is and isn’t is one way to encourage greater utilization by those who are misinformed or simply uninformed; encouraging physicians who think of failure to cure as a personal failure to make hospice/palliative care referrals earlier than when the patient is at death’s door is another way; and clearly you have ideas of your own for improving “the system.” I hope someone who is in a better position than I to address your concerns will take your position seriously.

        By the way, the book that was mentioned (When All That’s Left of Me Is Love) was not, as you inferred, Dr. Gallagher’s but rather my own — a retrospective and reflection on the year between my mother’s diagnosis and her death (and our three-month experience with hospice is a major part of the story). I hope you might choose to read it. It is filled with love and hope and comfort. It might warm your heart.

        • Unless you are very rich, the hospice is pretty much for the last 2 weeks of life in this state. It’s nice that you’re in a system that’s not overcrowded and underfunded. They talked to me about hospice, but several of my doctors told me that I don’t want to go there, and they’ll do their best to help me. I’m glad that your family had a good experience, it’s just not possible for many people.

        • I believe you misunderstood my response. I was inspired to reply by your comment, “and all the reasons why hospice represents such a gift (minutes 34-40 for hospice section).” I heard nothing in that section that detailed all the reasons why hospice is a gift.

          I realize that your experience was good and mine bad. If you want people to truly understand hospice, to choose the best hospice and to choose the best hospice specifically for them, just as in anything, they need to do their homework. They need to look at and understand both the good and the bad in any hospice. They need to ask lots of appropriate questions. I don’t see how anyone can argue with this. Just as is said for many important decisions, we do more research when buying a car or a TV than we do for end-of-life care.

          I was not saying that you were making any of my comments (that you interpreted that way) but that you were leaving out most if not all of them in the vein of keeping hospice as “a gift,” that is, totally positive. My comments on talking about bad experiences are, in general, talking about them to anyone. Most people don’t really want to hear them (even when they ask) and ultimately will not have their own lives changed because of your bad experience.

          To have a good experience and say that hospice is a gift implies to the general public that ANY hospice is a gift. It would be the same as me saying that all hospices will treat all their patients as horribly as this one treated my wife because of our bad experience. There’s a difference between saying that and saying that you should educate yourself to protect yourself from any bad that could occur in any hospice situation. This is no time for any surprises.

          As to the books, I believe I referred to your book and Dr. Gallagher’s book (and talk show) separately in my sentence. I appreciate your suggestion that I read your book. Unfortunately, and I’m neither saying nor implying anything about your book since I haven’t read it, I have read dozens of these types of positive experience books (usually written by hospice nurses) which I have found to include obvious embellishments and find them to be painful reminders of what could have been for my wife but now can never be. However, yours as a memoir is likely different and someday I might read it. I doubt, though, that it will warm my heart…you see that is the only gift that hospice gave me…I wish they could take it back.

  8. Thank you.
    jcs

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