Too angry to die

Allow me to describe a recent case and ask your opinion.  Today, you are the intake nurse at Happy Hospice and you are asked to evaluate Stan.  This gentleman has incurable cancer, but treatment would probably prolong his survival.   However, Stan has refused that treatment and been referred to you.  It is your job to decide if he is “hospice appropriate.”

Why has Stan refused therapy?  It is not that he denies there is cancer.  Quite the opposite he can spout specifics of the disease. Stan is not bargaining for more life or fooling himself that hospice can somehow provide a fix.  He is not depressed, at least in the sense of being suicidal.  No, Stan would definitely love to live.  Moreover, Stan does not accept that his time has come and therefore a good death is his only goal.

No, Stan feels one clear, emphatic emotion.  Anger.  Seething, pissed off, screaming to the sky, fury.  He is enraged that his life has been cut short and all that is lost. He is livid about the intrusion of doctors, nurses, technicians, pain, nausea and every look of pity, sympathy, and self serving son-of-a-b****h “friend” who comes by his bed to give their phony, frightened, glad-it-is-you-not-me, good ridden wishes.

Stan sits before you.  Jaw tight, eyes squinting, grimace fixed, hands clenched.  His wife is on the other side of the room, exhausted from crying, her bloated gaze on the floor. The house has not been cleaned in weeks. Dishes spill from the sink, across the counter. The grass outside is long, a dusty car sits parked, one wheel on the lawn.

“Why do I want hospice? Because, I am sick of this s**t and if I am going to die anyway, at least you can make sure I do it at home and maybe without pain. But, if you can’t help me, well then I‘ll just do it myself.”

Not your typical hospice referral.  No acceptance here. No peace. Not even the silent sorrow of loss.  Just projected agony, which spits in the face of the disease, and in the face of life itself.

So, do you admit him as a hospice patient?   How can you take a patient into your care when the whole reason that he refused treatment, is that he is too angry to cope?  It is hard to make a case that he has carefully balanced his options.  He is too upset to be open to details of therapy.  The family communication is a mess.  It seems doubtful that his decision to enter hospice represents informed consent. Is cancer the only reason to say “yes?”

Does Stan need to control his anger to really accept or be accepted into hospice?  Does he need, “pre-hospice” counseling?  Are you going to suggest he take a shot at chemotherapy?

As the referring doctor, I propose that Stan could be the ideal hospice candidate.   Not the easiest, by far, but then we cut our teeth on the hard cases. Stan and his family have vast needs and the potential for help is great.  This is the kind of patient that hospice may actually heal.  Heal, not of the body, but the soul.  If Stan is going to live out the rest of his life with any peace and if we are going to stop his anger from poisoning the generations of his family to follow, hospice may be the perfect therapy.

The basic tools of hospice are Stan’s best hope.  Patience, listening, quality of life and a primary goal to serve the patient’s desires, mean that with time Stan may build trust.  The emphasis on family and team, offers the chance that Stan will connect with members of the hospice service, and using that connection he can find comfort and help.

How far that healing will go, will depend on Stan, his family, his doctor and the skill of the hospice team.  It will not be black and white, but settle somewhere in a range.  At the failure side of the range, Stan throws you, the hospice nurse, out of the house this afternoon, goes in his room, never comes out, and dies a lonely, angry, destructive death.

At the radically successful end of possibility, is that Stan comes to find some calm and peace, generally accepts that the life that remains can be lived gently, talks to his wife, mends their personal pains and dies quietly at home.  Perhaps, he even takes a break at some point to try active therapy, and returns to hospice when that choice has run its course.  Of course, reality will be somewhere in between.

This is what palliative care and hospice are all about.  We enter the end of life, much as we have lived the rest.  Few of us are saints or angels.  We snarl, bark, get confused, cry, and carry on. Our dysfunctions amplify and weakness lay bare.  Nevertheless, with support, guidance and a kind ear, that which has brought us joy, satisfaction and love can come forth, and carry us through the darkest hour.

32 Comments

  • IBS
    Stan was tired of more chemo, and he was angry he had to leave with pain. If someone would have helped him, morphine and more morphine...and if it worked, I'm sure his wife, and Stan, would have been happier seeing him in peace. Not only Stan, but the entire family wanted Stan to pass gently and not leave his family over agony of what he had to do. They now will suffer tremendous guilt. His Cancer was not curable, apparently so why should Medicare or Medicaid make this decision for him...for the money? If Stan wasn't in severe pain, just a person that was supposed to leave this world yet chemo, which wouldn't cure him but may give him a week or two, also leads to anger. Stan knew what he wanted and no one listened to him; as if he was a nuisance. Every patient has a different pain tolerance. For some lucky patients, one just passes in the night but not all. It depends on the cancer. I blame the MD's, Dr S. Wasn't there a bill passed for NJ Oncologists that if a person is not curable, they are allowed to give them senatives or morphine to help them go onto their resting place? That way, "Doctors Do No Harm" ..only helping. I am a spitiual person, but if I was in Stan's place. I would have done the same. I feel the words, "Doctors Should Not Do Harm" should be changed to a different meaning; a meaning that means in Todays Society. It's not a doctors failure if one can't "FiX' the patient but at least help them in anyway they need.. That's not doing harm. A Palliative patient
    • James Salwitz, MD
      Certain "do no harm," is a fine starting place, but leaves a lot to be answered. I fully agree that doctors need to go much further to give comfort and support. If one adds physical pain to the emotional pain which is so much a part of disease, the suffering is massively increased. jcs
      • jill
        If a Doctor...or someone on staff does something that does do harm..and inflicts pain..severe..what should one do?
        • James Salwitz, MD
          What a horrible idea. First, do not hesitate to change doctors ... if you have been referred to that physician by another doctor, consider returning to that doctor for another referral and to inform that doctor, so that perhaps such a thing will not happen again. If the "harm" and pain was intentional, then you would have to decide whether to take legal action. Another approach is to inform the local medical society or the state board of medicine, both of whom are very interested in protecting patients and want to know about such events. If you think that the pain was an accident or that the doctor did not appreciate what was going on, then meet with the doctor to inform him/her about what happened. jcs
          • I really believe that what was going on was deliberate. Very personal....callous, cruel.
  • gopja
    He may be the perfect candidate for hospice, as well. Too many times emotional pain is the greatest symptom when the fairly newly diagnosed (and untreated) are evaluated for hospice. I remember that as being more common when a very reasonable option for pancreatic cancer was no therapy. Good observations, sir.
    • James Salwitz, MD
      Thanks very much, jcs
  • Mike
    Anger, especially in men, is really the other side of sadness, something we are not supposed to show openly. As Stan and the rest of us get older, some of our friends pass away or move out of state, our kids (if any) may or may not be involved in our lives, our ability to be productive (and physically active) may not be what it once was, and we become more and more isolated. Throw cancer into the mix, with the question of whether we can still live on our own terms. Stan has every right to be pissed!
    • James Salwitz, MD
      Good point. I think any reasonable "man" would rail against this much loss. It is a first defense and critical emotion, and not a malfunction. It holds us back from the abyss. However, if we let it become our only response, we may not be able to find any element of peace. jcs
  • Kim
    Very interesting story. Choosing quality of life over duration of life is not always that uncommon is it? People have many different reasons for choosing to not go through chemo, but we always think of them as wanting to go "peacefully." Interesting that it can be the exact opposite.
    • Mike
      I saw chemo as a way to direct anger towards cancer, using the sword to give it what was deserved. Though incurable, the odds were in my favor that any one of a number of treatments would give me many good years. If Stan had something really difficult with 5% odds, I can understand his resistance.
      • James Salwitz, MD
        Excellent point. They call it the "war" against cancer, because often getting pissed at the stupid disease and picking up a sword it what is needed. I guess the balance between benefit and cost is different for each of us. jcs
      • Gibbon1
        Reminds me of a joke. Goggle: F you and your canoe.
        • James Salwitz, MD
          A grim observation, but you are right. jcs
    • James Salwitz, MD
      Perhaps both emotions - wanting to end quietly and wanting to go out screaming, are reflections of our desire to be independent individuals ... to "have it our way" as it were. Nice to hear from you, jcs
      • Liz
        I think the problem is also the expectation that the patient be "grateful" there is treatment, be compliant, leave the anger and grief at home hidden from view... Then when you get a patient who is angry and can't control that people are taken by surprise and don't know what to do. The first 18 months of the dx of my cancer with no cure (had other cancers before that - 3 major ones and 3 minor ones so far, 3 in one year of which the one with no cure was the third one that year) I was an angry patient. I showed my stress by anger, a short fuse, unable to take frustration... I chose treatment but I was angry. I was fired by one doctor because I wasn't grateful enough - "most of my patients are grateful and you are angry" I was told. Yeah no s**t sherlock I was angry. I was angry to be dealing with yet again one more cancer and this one would kill me, life wasn't fair (never mind no one promised us a fair life), I didn't want to go through this again, I didn't want to have my life trashed even more by cancer, I was beyond stressed out and couldn't cope...and to top it off I was being criticized for not having it under control making the doctor's life/nurses's lives easy by not being angry. I was being asked to pretend nothing was wrong, not show my emotions so that those around me would be more comfortable. And that made me angry, not to mention I wasn't capable of that at the time. I was too overwhelmed and stressed out. Also remember that 5% of people who are depressed - their only symptom is anger. He could have fallen into that category as well.
        • Shellie
          Thank you, Liz. This has been my story at times.
  • Mary
    The misunderstandings that swirl around "hospice" . . . Such a shame when, as you pointed out, the services available can be extensive. Watched a relative die of cancer without hospice last year and it was brutal and heartbreaking and so very unnecessary. It wasn't anger but denial that kept this person from getting help. And we could do nothing to convince otherwise.
    • James Salwitz, MD
      Unfortunately, for many "hospice" is synonymous with "death," when in reality it could not say "LIFE" any louder. As one who has seen thousands die, I can definitely say I know nothing at all about being dead, but have I seen some remarkable lives lived so very well. jcs
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  • Kathleen Denny
    I enjoyed and entirely understand that Stan was livid at "every look of pity, sympathy, and self serving son-of-a-b****h “friend” who comes by his bed to give their phony, frightened, glad-it-is-you-not-me, good ridden wishes." It's a long time ago, and I behaved differently, but well I remember that my internal reaction to practically every card, letter, record of prayers on my behalf and visit was: "Empty, empty, empty. I'm going to die and you're all going to go on living." Oh, yes. And I was furious, furious! on learning that pre-existing conditions (and their bearers) are uninsurable in this country. Still am, in fact. As soon as I could, I accepted a job offer outside the country and for the next 3 years surrounded myself with people who had no idea of my medical history, except for my docs, of course. I finished chemo with Gordon Hamilton-Fairley on the National Health Service, which, of course, does not exclude pre-existing conditions. I was at another stage in life from Stan, and appeared very different, but in hindsight realize how much my decisions were driven by anger.
    • James Salwitz, MD
      Thank you for sharing that fascinating insight. It is remarkable to see how you used anger, without perhaps even understanding that drive, to fight the disease and get through. We are complex beasts, are we not? jcs
  • ellen
    Stan is exactly like a friend of mine who died 2 years ago. Her anger was overwhelming, & she refused to see her "friends" for the same reason. She stayed home, alone, til she collapsed. She broke a lot of hearts with her anger...
    • James Salwitz, MD
      Damn. That kind of pain spreads so far though us all as to be almost unmeasurable. jcs
  • Penny
    What I see in Stan's reaction is grief; grief over lost potential, lost dreams and expectations, a myriad of things he assumed would come to pass in his "later years" which cancer has robbed from him. While not everyone gets angry during some point in their grief process, many do. Hospice, most of whom are pretty good at helping folks deal with grief, may well be able to help him with this stage of it, as well as so many other things.
    • James Salwitz, MD
      Absolutely. Loss, anger and grief are indeed one. jcs
  • Anger is hard to get over, given the fundamental arbitrariness of why me. Anything that can create some space for the anger to dissipate and move towards acceptance can only help ease the pain on all.
    • James Salwitz, MD
      I think at our core, we are warriors, therefore anger is our default when challenged. Nonetheless, if we do not get beyond that point it is hard to heal. jcs
      • Kathleen Denny
        That is exactly what I have had to learn as a survivor. It's a long process to learn what is useful and when, especially when it stops being useful.
  • D Someya Reed
    First off, as me, I would agree with your assessment…based on the hospice philosophy of care Stan would be the ideal candidate for hospice and stands to gain much with the “right” care. But that wasn’t your question. Your question was asking if “I” was the intake nurse at Happy Hospice would I deem Stan to be hospice appropriate. That’s different and it would depend on several considerations. Some will not be to everyone’s liking but they are possible, plausible and realistic. Here are just a few. With hospice, being either a non-profit or for-profit business, I would have to know management’s policies on accepting patients. It would do Stan no good if I, as a compassionate nurse, accept him only to have the IDT, under orders from management, find a way to discharge him “for cause.” This is allowable under CMS’ Conditions of Participation, 2008 (Section 418.26, if you want to look it up) and varies by hospice. This section starts with (paraphrased) no patient, once accepted, can be discharged due to either being too costly or too time consuming. That’s good for Stan. He’s likely to be time consuming. But it continues that (paraphrased) CMS realizes that not all patients/conditions are appropriate for hospice (referring usually to violence, threats of physical harm, vicious animals, etc) and that each hospice can determine its own policy for discharge for cause. Happy Hospice might have a policy that doesn’t allow angry patients above a given threshold (that they decide). That’s bad for Stan. Some hospices might have a policy that angry patients must agree to sedation for their own safety as determined by the IDT RN or the hospice physician/medical director. Some hospices might do so even if patients don’t agree. This would be considered by some to be similar to Palliative Sedation and could involve the Doctrine of Double Effect. This could be equating intractable anger with intractable pain and, should he die from the sedation, not being culpable because their “intent” was to relieve pain, not cause death. If this were the case with Happy Hospice, I wouldn’t be working there and this, too, would not likely be favorable or acceptable to Stan. Now there is your statement that Stan “is not depressed, at least in the sense of being suicidal.” Yet, you later have Stan saying the ambiguous “if you can’t help me, well then I‘ll just do it myself.” I’m not sure if his reference is to help him die or relieve his pain. It would be critical for me as intake nurse to understand to which one Stan is referring. All hospices, by philosophy, reject assisted suicide. Some have stated policies about it; some not so much. I have an article from a national magazine about a person who claimed to have had the help of a hospice to grant her mother’s wish to speed her death through starvation. The mother felt death wasn’t coming soon enough. This would be stretching the hospice mantra about neither hastening death nor prolonging life a bit far by just standing idly by as she refused food. They did and she died. So I would need to know Happy Hospice’s policy on intervention in such matters as Stan doing whatever “it” is by himself. After I understood what he meant, of course. I suspect that either way this is probably not going on the plus side for Stan. Then we come down to the money. This is the back-biting going on in hospice today, generally between non-profits and for-profits…some, not all. Is the fiscal condition of Happy Hospice such that management is directing that any patient be accepted as long as they have a 6-month terminal prognosis certification? Does Happy Hospice “cherry pick” only the reasonably profitable patients and reject those historically likely to be unprofitable? Remember time is money, Stan will likely take considerable time and a good case must be made for discharging a patient that doesn’t make it appear to be based on any of the following: too costly, too time consuming or incurs suspicion of patient abandonment should anyone from either the State or CMS ever decide to review Stan’s file. If any of this were the case with Happy Hospice, I wouldn’t be talking to Stan because I wouldn’t be working there. Now I, as compassionate Happy Hospice intake nurse, would know these policies (and others) and would lay them out on the table along with reasonable expectations (both ways) for Stan to accept or reject. His answers, not my opinions except to the extent of Stan’s believability, would determine if he was a good fit for Happy Hospice. I would have to keep in mind that time is neither on Stan’s or Happy Hospice’s side. I’m assuming that further chemotherapy is futile and that Stan is a “let’s do it or not” type patient and would not be agreeable to any pre-anything counseling. I found it interesting that you said, “We enter the end of life, much as we have lived the rest.” I believe that each of Dame Cicely Saunders, Florence Wald and Elisabeth Kübler-Ross (all considered founders of the modern hospice movement) have said the same thing. Kübler-Ross said almost identical in her book, ‘On Death and Dying.’ I doubt that any of them ever rejected a patient for being angry no matter how extreme the anger. Kübler-Ross came up with the five stages of dying which includes anger. She acknowledged some people never move beyond it. Anger, of itself, should not be used as a reason to exclude someone from care.
    • James Salwitz, MD
      Excellent points. The second paragraph of my blog intentionally lists, by referring to his symptoms, each of Dame Saunders' five stages of dying. Your point about what he means by "do it myself," was left open in order to highlight the not always clear line between refusing therapy and actively seeking death. Needless to say I am appauled by the idea of a hospice which would direct care specfically to hasten death. Does not go along with the idea of hospice as "life giving," not to be illegal in every State of these United States. I have never been in a hospice meaning where an angry patient was excluded simply for holding that emotion or that medication was mandated, but I have been present when safety concerns for patient, family and staff were addressed. I know of a couple cases where violence resulted in withdrawal of hospice. However, in general, I would propose there is no better team suited to try and address such emotions and help the patient cope. jcs
      • D Someya Reed
        I agree. The right hospice team in the right hospice would be the best way to go. Just for my own understanding (and something I've been looking into) may I ask in the cases of hospice withdrawal due to violence...was it actual violence or the perception/anticipation of violence? Thanks.

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