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Maggiemay1971 Asked July 2022

Does anyone have any experience with palliative sedation?

Mom is 96 and is in a residential care home. For the last 6 months she has been experiencing extreme pain due to chronic sciatica, arthritis and headaches due to previous head injury from fall. We've done all the usual methods to relive pain including adding hydrocodone and botox injections. It still doesn't seem to help. She cries several times a day and is quite agitated. At times she is combatant. She has gotten to the point where, although she can still walk with walker she is increasingly becoming more clumsy. She is unable to toilet herself bc she's been flushing her pads down the toilet, so an aide has to always assist. She has 'forgotten' how to do many things as simply as using the chair remote to put herself in a reclining position (or back up). Her confusion level has elevated as well. Her team said they are sure she is transitioning and entering the final stage of her life. Since her pain seems to be irretractable at this point, palliative sedation (PS) was suggested as an alternative (not by her team). Basically, it's keeping her sedated to keep her out of pain and becoming anxious, confused and afraid. Before I bring it up with them, I would like to learn more about it and to hear of anyone's experience with it. TIA

Taarna Jul 2022
I would ask that she gets referrals with a psychiatrist that deals with seniors (for issues with agitation and need for "calming agents") and a pain specialist (a doctor that deals with different types of pain and treatment of chronic pain)., Constant sedation carries risks of developing pneumonia, pressure injuries (bedsores from not moving enough), and poor bowel function (also from not moving enough). Get advice from the psychiatrist and pain specialist before moving into constant sedation.

Llamalover47 Jul 2022
Maggiemay1971: Prayers sent for this most difficult of times.

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MargaretMcKen Jul 2022
My mother died at home from cancer, heavily sedated with a morphine driver for the last 24 hours. I still think that it may have been too high a dose, but it can only have brought forward her death by a few days at most. I have no doubt that sedation and pain killer was the best thing for her. Dying slowly with cancer pain is not what she or I or the doctor would have wanted for her. Or God, for that matter.

The death of someone you love is always emotional, always troubling, and always brings ‘if only’ thoughts. Have courage! Yours, Margaret

Maggiemay1971 Jul 2022
Hi Ann, Thank you for reaching out. I, too find myself conflicted over the moral and religious aspects of this. After talking with a friend of mine who is a hospice nurse, she lessened my anxiety and actually told me the same thing you told me. She had palliative/hospice care for both of her parents as well as her in-laws. I will be visiting with the Care team and her doctor today. An outside agency would be called in to do an assessment of mom if that is what is agreed on after today's visit. I understand it would be up to the Hospice agency whether they think she is a candidate for either palliative or hospice care. Actually, I'm glad they will be making the decision. This has been weighing on me. Thanks again for reaching out, your kind words and for sharing your thoughts. Pat

Abby2018 Jul 2022
When you mention her "team"...is hospice an integral part? If not, then perhaps it should be considered. Mom was on hospice for two months before her passing and the meds made a dramatic difference in her anxiety levels, behavior, and pain. As sad as it was to watch her diminish mentally and physically it was a blessing to know that she passed peacefully.
Maggiemay1971 Jul 2022
Hi Abby, The team I was referring to was the Care Home she is now in. They are the ones who provide me an update each day. The Palliative care was suggested to me by a friend who is a hospice nurse. I will be visiting with the Care team, and her doctor today. An outside agency would be called in to do an assessment of mom if that is what is agreed on after the visit today. Thanks for reaching out and sharing your experience. I'm so sorry for your loss.
AlvaDeer Jul 2022
This sedation is general Hospice sedation and it represents end of life care. It is ordered when the MD and family and patient are in agreement that the patient is dying and that further treatment is not indicated, would not help, and indeed may hurt more.
The goal for hospice is COMFORT and that means medications to sedate, relieve pain, in larger doses than those normally given. It is recognized by all that this level of sedating someone below the level of dreams with medications to prevent pain and air hunger may/can hasten death by some minutes, hour, even days of agony and torment that would exist without relief from pain.
There is no coming back from deterioration of this kind in the spine. There is only constant torture. I think you should move now from palliative to hospice care, and should discuss with MD and with hospice interview until you fully understand that you are moving now to the end of life.
I am so sorry.
Maggiemay1971 Jul 2022
Hi AlvaDeer, Thank you for reaching out. I will be visiting with the Care team, and her doctor today. An outside agency would be called in to do an assessment of mom if that is what is agreed on after today's visit. I understand it would be up to the Hospice agency whether they think she is a candidate for either palliative or hospice care. Actually, I'm glad they will be making the decision. This has been weighing on me. Thanks again for reaching out and sharing your thoughts.
AnnReid Jul 2022
Based on the research I’ve done and the opinions I’ve received, “palliative sedation” MAY be the most humane course of care for your loved one. I have come to the conclusion that it will be considered for my LO if/when the need arises.

My mother received immediately before she passed at age 95, and it was indeed a peaceful and comforting passing.

I had concerns about it on faith based and moral grounds, and happened upon an article written by a clergy person of the same faith as my LO. Reading that, and knowing the policy of her residential center, convinced me that my relative would be content with it as it relates to her written, legal, personal wishes.

You are a good, loving daughter. You may be at peace with the understanding that you have addressed her needs in the best way accessible to you, and most important, to her.

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