My wife has a friend who is a hospice nurse and she offered to answer any questions I might have regarding hospice. I called her today. We had a great conversation and she answered a lot of questions I had.
One of the topics we discussed was pain management. She explained how the goal of hospice is to keep the patient comfortable and what that means.
I told her one of my fears is that my pain won't be manageable and I will suffer, regardless of the heroic efforts of those taking care of me. I've had a taste of that already so I know this is not an unrealistic concern.
She said that while they do the best they can, not all pain is manageable. Then she said this: "The goal is not for the patient to be pain free, but for the pain to be tolerable." My first thought was that it sounds like a great theory for people who aren't actually on the receiving end of this so-called "tolerable pain".
So my question for you who do have pain is this: How well managed is your pain and how tolerable is it really?
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EdBacon
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For my mother, we did not want "tolerable" pain. We wanted no pain, and that was what she got. She had a morphine drip that was continually titrated up, fentanyl patches, and fentanyl lollipops for the breakthrough pain.
End-of-life, hospice, and pain control isn't always so simple. My mother was hospitalized with congestive heart failure. Following surgery, my mother had bleeding from somewhere in her trachea, apparently from the tube inserted during surgery. Hospital staff couldn't stop the bleeding. While bleeding wasn't profuse, it was enough that she would choke if she didn't cough it up. He condition worsened due to this and other problems. Hospice was contracted to attend to her in the hospital. But they couldn't administer morphine, etc., because that would dull her gag-cough reflex and she would choke to death on her own blood. She died a miserable death.
With all empathy and compassion, I believe the issue of adequate administration of pain management by hospice services deserves close study with an intense scrutiny from a medical perspective of what intervention the hospice staff is capable. The extreme urgency of challenging belief systems of faith based hospice services cannot be underestimated.
My dad died from this same cancer. When it got bad there was morphine, and Oxycontin readily available and we used it often. One of my siblings was worried we were giving too much. Solved that with a simple, "you know he is dying, not like we r killing him" To my knowledge pain was managed well
I have personally cared for 5 souls at their end of life on hospice. The longest being on hospice for nearly 4 years, the shortest duration was my Brian at just 3 days.
I will say that in all cases pain was managed. I will not say that there weren’t moments of breakthrough pain, but overall I think pain control was managed quite well.
With my father, it took a lot of morphine to control his pain. Did we hasten his death? Perhaps, but not by more than a day or two tops. His liver and kidneys were shutting down. He got what he needed to be comfortable.
Brian died from this disease. It was genuinely a peaceful experience. He had more pain living with the disease on a day to day basis than he ever had from dying from it.
My experience recommends getting hospice on board sooner rather than later. There support services are profound for both patient and caregivers.
My very best wishes to you in your journey. Cancer sucks.
Pain tolerance is an individual variable. The type of pain makes a difference as to whether it is tolerable or not. When I broke my index finger last January, I barely noticed it because of my constant lower back/pelvic pain. I had become used to the constant pain for which I took no meds. The break turned out to be a hairline fracture on the x-rays. X-rays also showed degenerative disc disease, L4 out of alignment, and scoliosis >35 degrees. Because of the degree of scoliosis, back surgery is guaranteed to fail. I was sent to a pain management clinic that prescribed a NSAID and Lidocain patches and ordered not to lift >15 lbs., preferably >5 lbs. I had to stop the NSAID because I was falling asleep at the wheel. [I am the sole driver for the family.] For me, the pain is a warning to stop doing something or I will no longer be able to be a caretaker to the cancer patient and the diabetic daughter who won't stick to her diet. I use a fancy cane given to me many years ago by a fellow polio survivor more often now, and have told my percussion section that they will have to move the heavy metal equipment. Until a suitable replacement can be recruited, I will continue to function as section leader but only play the bass drum seated on a high stool. Time to get some shuteye before the day's concert, all female composers and conductors for Women's History Month.
My experiences as a physical therapist at times treating hospice patients both in the home(non-institutional ) and in a hospice house(institutional hospice)is that pain free status is definitely achievable, albeit more easily in a hospice facility, where levels of consciousness are certainly impacted but where pain is intractable that is truly a secondary concern. Only speaking from my experiences.
We all avoid pain. But some pain is unavoidable and we all deal with it in various ways. Chronic sharp pain is what is intolerable. For this we turn to health care providers who we hope can find drug free solutions but in the end drugs may be the only choice. Good luck, sometimes that is what leads to solutions.
My mum went into a hospice 4 years ago at the age of 85 with ovarian cancer. She wasn't in great pain as far as I could tell but was unable to look after herself due to low mobility and my 89 year old dad could no longer care for her at home. My experience of hospice care was mixed. Although not in great pain, she was a difficult patient and they put her on a driver drip - I don't know exactly what was in this but she went rapidly downhill cognitively over a couple of days until she was more or less constantly sleeping. They periodically increased the driver strength and she died in her sleep within a week. Draw your own conclusion from this but at least it was a peaceful death.
Sounds like what is called palliative sedation. My dad got that. It was the only way to deal with his high level of pain. To me, it's the next best thing to aid-in-dying meds which are not available everywhere. My plan is to use the meds.
That's what I thought and why I have a bitter/sweet view of hospice care in the UK. However, when I get to that point, I'm sure I'll be glad to have what they can give me!
For me, part of pain management is also about the level of lucidity. So, it may be that you get to a point where the pain management overtakes one's ability to hold a conversation and interact with those around them.
I would be interested to know people's experiences with when that transition occurs when you can no longer communicate, sue to the pain meds?
I am now 23 years out from my first terminal diagnosis, constant Lupron, 57 High density radiation treatments and or "chemotherapy for about 18 years. There are other complications but I want to cut to the chase. On the 1 to 10 Scale I can live a happy, positive and productive life up to about 3-4. At 5-6 many simple activities, especially if it requires movement become out of reach and I could continue to be somewhat positive but not happy. I lived at 7-8 for about 2.5 years and then could not stand it and labeled myself, "crippled" went almost nowhere and had to hire people to walk the dog and do all the house chores. (my wife passed away from brain cancer 8 years ago) I researched medically assisted suicide, so i must say that was NOT tolerable.
A miracle happened about three months ago when I was offered an electronic spinal stimulator and after the surgical insertion I was pain free in my Lumbar Spine and hips. I am now at a 2 on the pain scale and starting to try to build strength back to walk again and be able to climb stairs.
You posed a wonderful question and i hope we harmony other ideas and responses. Thank You.
About pain and quality of life, I have HPT, brain giving mixed up signals to my body and vice versa, even allergic to morphine🙄 I want to live with at least 'pain' as possible, I have been told by my GP as far as my 'smashed' rib cage structure there is nothing that they can do. My epilepsy, similar situation, but at least that has been agreed, so everyone knows where we stand as far as my health. Ironically I had my blood tests for my PC done today, I walked out of the Health Centre, I realised no endless lists of appointments, but I have been incomprehensible most of the day, burbling away, I'm glad I live by myself! Okay maybe I should wait for those results, I tried to be very matter of fact, as my body is in such a poor condition, that negative PC would not really matter, maybe my "body"/ "brain" is giving me good vibes?🤔
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