Fighting for effective pain management for terminal patients

Sunday, October 5, 2013

Good afternoon:

I write today to caution readers attending to a dying parent.

My mother was in a lot of pain when she was dying of cancer. I wanted her to be kept as comfortable as possible, but the medical staff wanted her to be conscious and aware of her surroundings, even if that meant she would be in considerable pain.

Instead of effective pain management by administering dosages at regular intervals, as her doctor ordered, they administered it on an as-needed basis. Oddly, one of the arguments for withholding pain medication was to prevent addiction. That makes no sense with a dying patient in constant pain.

Chasing pain spikes flaring up in a dying patient does not manage pain. Instead, it assures that the patient will periodically suffer unnecessary pain.

My mother complicated effective pain management. She would complain to me about her pain and I would summon a nurse. When the nurse appeared at her bedside, my mother would put on her I’m-tough face and insist she was OK.

Eventually, one of the nurses complained that I was trying to kill my mother. I was furious and a considerable amount of unpleasantness followed.

With the assistance of her doctor and the administration of the nursing home, I finally succeeded in getting effective pain management for my mother.

Effective pain management is possible today. Unfortunately, you may have to fight to get it.

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19 Responses to Fighting for effective pain management for terminal patients

  1. aussie says:

    God Bless, Judy. Sounds like she passed over in peace, and didn’t linger once she decided she’s ready. Let there be peace for you too; she’ll always be with you but without the worry and pain.

  2. colin black says:

    Judy passed on over but never away .You are here as a constant part of her as are all her decendants an friends some carry her in memorium through memorys shared experiances.
    An some carry her through there mycoodial D N A An genes people pass along or over but never away.

    Peace an condolences over your short termloss.

    Try to live as a her memory as short term pain .
    Followed with a long time gain its what She would want.

  3. Judy75201 says:

    Thanks again, everyone. Mom passed away about 1 1/2 hours ago. May she rest in peace.

    • fauxmccoy says:

      my condolences to you, judy and although losing a loved one is beyond painful, in my experience, watching them linger in obvious pain is worse.

      may you both find peace.

  4. MDH says:

    End of life issues are stressful. My father lived alone till he was 89 years old. He was fairly sharp up to that point, but very stubborn. He refused to use a walker. Anyhow, he suddenly got dementia and lived with me for about eight months till the mess was too much for my wife. Part of his dementia was his view that paying one of my wife’s friends $3000 per month to be a live in caregiver/cleaner was too much. So I ended up setting him up with my cousin and paying her behind his back. I had financial power of attorney. He lasted two month under her care till he started the end game wherein he was constantly going back and forth to the hospital for pneumonia. By that point, we had him in a nursing home. His mind was far gone the last time I saw him in the hospital. All he kept saying was get me out of here or keep asking me the nurses name. No cognizance of anything else. Which I did by setting up Hospice care. The medical staff sat me down and told me that keeping him alive would entail a feeding tube and revival. I looked at them and said “revival sounds a bit like water boarding, does it not? They said yes. My father lasted one day after he got out of the hospital. With dementia, there will be no final talk. The mind is so far gone that they don’t even know you are there. So make your peace in advance. In hindsight, I have found out that my father had a few nasty falls that contributed to the dementia. However, he told me that if he could not walk he wanted to be dead. So I guess he did it his way. I had to make the call on the dose of morphine to help him pass. Its not easy. You have to put yourself in the mind of the other person. Fortunately, I had enough talks with my father about that subject when he was still sound of mind.

  5. colin black says:

    Ive been living this for 18 years my better half has needed pain medication of stronger potentcy for ever more serious an painfull conditions.

    Thease are all medical diagnosed conditions she has been prscribed threse madications for by the way not imaginary backpain give me some happy pilllls type scenario.

    Over 40 medications a day not all pain msdication wafrin for blood thinners as she suffered three cardiac infractions in 8 years.

    But a good thirs were pain medication .

    Its difficult to say as the States clalls same medicines by different names .

    Like qualudes we refer to an are branded mandrax at least they were b4 they were banned,

    The best sohpohrrific sleeping pill ever made an the UK friggin babs them.

    Barbiturates you can have by the bushel but mandrax NO.

    Anyway the best pain killers are opiate based..so if you are an abuser of drugs or even an ex abuser of drugs an its on your medical files you are royally screwed.

    Because any request for drugs that can give you a buzz be it vallium sleeepers pain killers made by an addict or an ex junkie is viewed not with suspiousion.

    No with cold stone certainty you are only presenting yourself in the emergency room with a severed thumb cut of as a defence wound whilst three guys beat you robbed you an raped your wife because you want to get high.

    From tom to bottom an that means from chief surgeon to the guy that mops the floors anyone involved in drugs in hospital or doctors surgerys asking for them is scamming .

    Many do I admit doctor shop so there scum like women whom cry rape make it hard for genuine victims to be believed.

    But it true one you’ve abused drugs your destained to die an agoniseing death Ive seen it with my own eyes .

    Ive experienced it my self

    An as I alluded to at start of this hanging wallpaper rant.

    Lived it for 18 years with My Wife as Ive had to fight tooth an claw to get the medicines shes entitled to .

    Wich has been darn near miracualaus at times as even although Gail had been clean an sober for 20 years before she started getting seriously ill.

    They still done the junkie predudice dance an tried to avoid prescribeing drugs they would’ve been handing out like smarties to patients with no history of drug abuse.

  6. Rachael says:

    My father and my stepmother had often talked about going to Europe. When they had the money, they didn’t have the time; when they had the time, they didn’t have the money. Finally, my dad said Eff it and they went. On their last day there, he had a heart attack in Austria and was put on life support. It is a Catholic country and they do not offer what we call here in the U.S. “comfort care.” My stepmother, step-sister and step-brother sat at his bedside for almost 3 weeks while everything they could do was done for him, though he was in severe cardiogenic shock and all his organs had shut down. There they were in a foreign country, a language barrier, just awful – though the care was excellent they said. The one good thing there though was that it is also a socialist country and the bill for his almost 3-week hospital stay was what one day would have been in the U.S.

    In stark contrast, my friend’s husband had a heart attack and had a similar outcome. They took him off all life support and put him on “comfort care,” where he was given morphine until he finally slipped away, quietly and comfortably a few hours later.

    As well, my aunt had esophageal cancer. It was a long ugly process. It got to where they told her she had maybe 3 months if she didn’t take another round of chemo, and maybe and extra 3 months on top of that if she did. She opted not to. The chemo had made her so sick, she didn’t want to spend her last days like that. She was with it enough she was able to get her affairs in order to make it financially easier for her kids, she got hospice, I took my son (who was then 5) with me to see her then (I had bereavement time at work, but I felt I would rather see her while she was still alert – and I knew she would love to see my son while she would be in a state to know who he was and enjoy him) and we had a wonderful family visit, where she was tended to by hospice and comfortable. She slipped away 2 months later with her kids by her bedside.

    I think my stepmother has always been a bit envious of my friend whose husband got the comfort care (she did say more than once she wished it had been like that for my dad) and her sister.

    I know there are some people here who feel that it is interfering with life or something, but it didn’t hasten death for my friend’s husband or for my aunt, it just allowed them to be more comfortable while it happened. I think it is much better here in the U.S. in that respect than in other countries. Even back when I was a nurse in CCU, 10 years before the state of Washington established the Death with Dignity Act in 2008, we would do everything we could to keep people comfortable, with their families close by for their final breaths. It was when they had just started doing brain scans and stuff and pronouncing people brain dead and taking them off of life support. But Washington later went beyond that, and I am glad they did.

    • Judy75201 says:

      Rachael, I had a sister die of brain cancer 23 years ago. I learned everything I need to know about chemo and “heroic” efforts from that tragic event. Her doctor used her to pad his resume, and the extra 3 months it bought her were rife with sickness from chemo, an additional brain surgery, and finally coma, where she starved to death in a hospital hospice ward.

      • Rachael says:

        ((((((Judy)))))) I’m so sorry. So very very sorry.

      • Endless Summer says:

        Judy, my heart goes out to you, both for what your sister suffered and what you are going through providing end of life care for your mother. I hope that your days hold moments of joy to help you through the sadness and stress.

  7. Judy75201 says:

    Thanks for this. My mom has been in in-home hospice care for 4 months now, with the family providing 24/7 care for the past 8 weeks. Hospice is directly on board with the need for palliative care, and has provided adequate morphine and lorazepam. We are all on board with that, too. Our problem is that she so often does not want to take (or does not feel the need for) the medication, even when she appears to be in distress.

    She is now in the active dying stage, and it is the most heartbreaking stage of this entire nightmare. Or I’m just at the end of my rope, really, I don’t know which. I just wish for her to go gently. A protracted death is a cruel one.

    • I think she is blessed to be cared for by people who care about her and know how to manage pain.

      (((Judy)))

    • fauxmccoy says:

      hang in there, judy. at some point, relatively soon, she will not be able to participate in the decision making. this was an issue we had with my father as well. it was a blessed relief for me, when he took to his bed for the last time, after his last meal — although he lingered for 2-3 weeks with no food or water.

      watching that process is brutal, but when he could no longer speak, i could speak for him. i never left his side, knew the doc’s orders and made damn sure that he got his meds at every prescribed interval.

      i think that for my father (and probably your mom and fred’s) that giving up control in this process is difficult and there are no easy solutions. i encouraged him to follow his doctor’s orders, but he would get confused and want to follow his previous schedule, which was no where near sufficient — but it did allow him whatever precious autonomy was available to him.

      i shall pray for you both that this journey is mercifully brief and peaceful, that was the only comfort i could find in the situation.

      • Judy75201 says:

        Thank you, Faux. She is at the point where she can still somewhat vocalize, but mostly we can’t figure out what she wants or is trying to say. It is distressing. They said to expect her to go into a coma, and I think that is nigh. She reached her arms to the sky today and held them there. I asked her earlier if she could see me and she shook her head no. She has had almost no food for two weeks, and is taking in very little water, just tiny sips a couple of times a day. If she had asked for help dying, I would do it, but she didn’t, so I can’t. I’ve made sure my family knows my wishes to be helped.

        • fauxmccoy says:

          @judy — i witnessed the shaking arms at the ceiling as well. for my dad, it was involuntary muscle spasms which were pain induced. at that point, i asked the docs to add a serious muscle relaxant (valium, ativan, the like) and they did. it helped enormously. i am surprised your mom is able to speak at this point. does she actively refuse medication? if you were to talk to the doc/nurse in the hallway to simply bring meds every X hours, would that work? of course, i say all of this in hopes that a medical power of attorney has been signed. give it a shot. if the meds just show up, she may take them as routine.

          oh friend, i remember this as if it were yesterday — my heart goes out to you both. (and keep singing)

        • Trained Observer says:

          Circumstances involving pain meds or the need for them vary so widely, especially depending on whether the loved one is hospitalized or at home. Or whether hospice is involved.

          My late husband died of cancer — metatastic soft tissue sarcoma tspread to the lungs — and was on no pain meds at the end, and in no pain, other than occasional phantom spasms from a hemipelvectomy. After having opted to check out of the hospital which had kept him going at various intervals for a couple of grisly years, his was a peaceful death.

          Since my dementia-plagued dad was beyond articulating his level of pain, I’m now grateful that he was put on a morphine drip during his final days. I had been approached by nurses to authorize that as a reliever for any possible pain he might be in, and agreed.

          Later a doc I didn’t know came in, took a look, and said “that ought to expedite things.” I was infuriated by that callous remark and the possibility that I had been hoodwinked into okaying the drip to speed up his passing.

          Now with the distance of time, I see that comfort for the loved one, no matter what, is more important than any other factor including my fury at the doctor, and my suspicion that I had been misled by nurses. My dad had a strong heart, and (despite the drip) outfoxed Dr. Expeditor hanging on far longer than anyone expected.

          The most any of us can do is to make sensible decisions, and to make our wishes known for when our time comes.

          Judy, I am thinking of you.

  8. William Walton says:

    Prof: as I posted before, Dad as an M.D. would prescribe morphine to snow under terminal cancer patients. One intern questioned him that if the patiet survived, they would be addicted to morphine, Dad’s response was that if the patient did survive the cancer she would at least be confortable, And if she did survive, those that were M.D.’s were educated in pharmacology during medical school could also help them to return to normallity.

    • fauxmccoy says:

      that is exactly what my oncologist said me when i was going through treatment for hodgkins lymphoma in ’96. i was 31, otherwise in great health but questioned the pain meds he presecribed (i did hurt like hell). i knew after a few weeks into the diagnostic/staging process that i would likely survive and was worried about addiction. my own mother (an RN) holds serious and unrelenting views against the use of opiates and it made an impact on me.

      doc said ‘right now, you need them. when we get through this, if there’s a problem with addiction, we’ll deal with that. right now, though, we have to deal with this’. he’s a great man, so was your dad.

      other than the choice of natural childbirth, pain serves no purpose.

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