COMMENT: “The effectiveness of liquid morphine & Ativan seemed inadequate. The 'active dying' process took six days---no food, no water, and it seemed her body began to decay before our eyes. Even the hospice nurses were somewhat surprised at her strength. We were able to give her wonderful care at home, and hospice was a valuable resource, but strongly opposed to the use of a narcotic patch for additional comfort care, despite our calm but assertive concerns. Finally did start the patches, and wished they could have been started sooner. We still struggle with the memory of those final days, and the periodic suffering she experienced. Your book “Gone From My Sight” was so helpful to us. Perhaps the concerns I've raised belong under a different topic of your blog.
There are several areas in the above comment I am going to address: comfort management, use of a transdermal patch, the normal dying process and being at the bedside watching someone we care about die.
Comfort management: Pain is unique to each individual. There is no one dose, one kind, one method that fits all. Unlike the old adage, “Take two aspirin and call me in the morning”, end of life pain management requires time and experimentation to reach a comfort level. Closeness to death itself also affects how medications will be responded to. The closer to death the less circulation there is to distribute the medication throughout the body.
Use of a transdermal patch: A patch is pain medicine commercially put into patch form and applied directly to the skin. Some end of life care professionals like and use the patch system, others do not. I personally do not use the patch if the person is within days of death for a couple of reasons. Early in the disease process a patch can be an excellent source of pain relief but when very close to death, circulation is poor so absorption is poor. Mainly, a patch is a specific dosage for a specific time period and what is needed as death approaches is the ability to regulate the dosage and time frame to each individual. Patches and time release medications do not allow that latitude. If the person is non responsive and unable to swallow but agitated and pain has been a part of their disease process then medication can be given rectally or made into a creme and rubbed onto the skin. Generally there is no need for invasive injections or IV medications.
The dying process: In the one to three week time period before death a person enters what I refer to as labor. That labor is harder on us the watchers than it is on the person who is actively dying. The person who is dying is so removed from their body they are not experiencing it in the same way that we, the watchers, are perceiving.
In those days to weeks before death the person is not eating or drinking or they are taking so little fluids we believe they can’t possibly be comfortable. This is the time the body is shutting down, letting go of it’s hold on this life, dying. No food, no water in the last days of life is perfectly normal. That is how we die. It is not uncomfortable or painful to not eat or drink at this stage. It is actually uncomfortable and disruptive for the dying person if we force food and water in the days to weeks before death.
This is a short explanation about a complicated subject. Watching someone we care about in the dying process is frightening, stressful and generally misunderstood. Knowledge reduces fear but it is generally after the fact that we begin processing and asking questions.
Something More... about Comfort As Death Approaches...
It is my hope that people will read “Gone From My Sight,” “The Eleventh Hour” and watch “New Rules for End of Life Care” so that their experience will be less traumatic. Having someone close to us in the dying process is so very sad but with a bit of knowledge it doesn’t have to be a bad experience.
14 comments
barbara
Hi Kim, I am sorry hospice did not meet your expectations. I suggest you call the administrator of the hospice and have a sit down, face to face, meeting and tell her/him your thoughts. The higher ups need to know how their agency is being perceived. The exchange will make you feel better and hopefully it will bring forward changes that will help those that follow you. A paying it forward kind of thing. Blessings! Barbara
Hi Kim, I am sorry hospice did not meet your expectations. I suggest you call the administrator of the hospice and have a sit down, face to face, meeting and tell her/him your thoughts. The higher ups need to know how their agency is being perceived. The exchange will make you feel better and hopefully it will bring forward changes that will help those that follow you. A paying it forward kind of thing. Blessings! Barbara
barbara
Hi Angie, it is hard watching our loved one not eat. We socialize over food and we use food as an expression of love. As death approaches it becomes a gift we can’t give. We have to remind ourselves to always offer food but not force. The body does not need the energy that food provides. It is releasing its hold and food most definitely is our anchor. My blessings to you. Barbara
Hi Angie, it is hard watching our loved one not eat. We socialize over food and we use food as an expression of love. As death approaches it becomes a gift we can’t give. We have to remind ourselves to always offer food but not force. The body does not need the energy that food provides. It is releasing its hold and food most definitely is our anchor. My blessings to you. Barbara
barbara
Hi Kim, thank you for your kind words. Have you read my book The Final Act of Living? It is kind of like a course. Blessings! Barbara
Hi Kim, thank you for your kind words. Have you read my book The Final Act of Living? It is kind of like a course. Blessings! Barbara
barbara
Hi Ronice, I see two questions in your response to reading my blog. Did your husband need the morphine and would he have been alert and talking to you if he hadn’t had it? I don’t know about your husband’s medical history so I can’t say if the morphine was necessary. If he had pain during his chemotherapy courses due to disease progression then I would say that morphine was absolutely necessary. Dying itself is not painful so if he did not have a history of pain with his illness then I’m not sure why he was getting morphine—but I don’t know any of his history so I can’t say why he was receiving morphine. Whether or not he had morphine he would not have been alert and talking with you before he died. We don’t die like in the movies being alert and then dead. In the days, hours and minutes before death we are non responsive. That means moving, talking, but not making sense, not responding to what is happening around us.
I’m sorry you did not have more guidance. From your description is sounds like your husband died the way a body normally dies. Nothing bad, very sad, but nothing bad, happened. My blessings are with you. Barbara
Hi Ronice, I see two questions in your response to reading my blog. Did your husband need the morphine and would he have been alert and talking to you if he hadn’t had it? I don’t know about your husband’s medical history so I can’t say if the morphine was necessary. If he had pain during his chemotherapy courses due to disease progression then I would say that morphine was absolutely necessary. Dying itself is not painful so if he did not have a history of pain with his illness then I’m not sure why he was getting morphine—but I don’t know any of his history so I can’t say why he was receiving morphine. Whether or not he had morphine he would not have been alert and talking with you before he died. We don’t die like in the movies being alert and then dead. In the days, hours and minutes before death we are non responsive. That means moving, talking, but not making sense, not responding to what is happening around us.
I’m sorry you did not have more guidance. From your description is sounds like your husband died the way a body normally dies. Nothing bad, very sad, but nothing bad, happened. My blessings are with you. Barbara
barbara
Hi Shelly, about your question of creams and the patch both being affected by decreased circulation. You are right, actually all mediations no matter how they are administered, are affected by the lack of circulation that is occurring. The difference between a patch and a cream is patches are time released and creams generally are not. You can’t really “play” with something that is time released. Another example of time release is MS Contin. Can’t adjust it like you can a simple liquid. Thanks for asking. Yes, labor and transitioning are used as the same terminology. Barbara
Hi Shelly, about your question of creams and the patch both being affected by decreased circulation. You are right, actually all mediations no matter how they are administered, are affected by the lack of circulation that is occurring. The difference between a patch and a cream is patches are time released and creams generally are not. You can’t really “play” with something that is time released. Another example of time release is MS Contin. Can’t adjust it like you can a simple liquid. Thanks for asking. Yes, labor and transitioning are used as the same terminology. Barbara
barbara
Hi Rita, I am glad reading my blog article helped you understand what was happening as your mom was dying. You might want to write her a letter now. Put all your feelings, thoughts, and tears on paper. Then burn it and scatter the ashes to the wind. Let how well you live your life be the testament to your love for your mom. Blessings! Barbara
Hi Rita, I am glad reading my blog article helped you understand what was happening as your mom was dying. You might want to write her a letter now. Put all your feelings, thoughts, and tears on paper. Then burn it and scatter the ashes to the wind. Let how well you live your life be the testament to your love for your mom. Blessings! Barbara
Karen Dougall
Wonderful series, compassionate and thorough information for family and caregivers of the dying. Thank you so much for your ongoing publications. Namaste!
Wonderful series, compassionate and thorough information for family and caregivers of the dying. Thank you so much for your ongoing publications. Namaste!
Rita Estrada
This described just how my mother passed.I wish I would of read this before and had more knowledge.Watching my mother die was so painful for me.As I read this it brings me to tears.
This described just how my mother passed.I wish I would of read this before and had more knowledge.Watching my mother die was so painful for me.As I read this it brings me to tears.
Shelly Cole
Hi Barbara, I’m truly curious, if the slowed blood supply effects the absorption and effectiveness of a patch, how is a cream any different? It fascinates me that cream would be effective where the patch would not be, quite so much. And would what you refer to as labor be the same as what I’ve heard referred to as transitioning?
Hi Barbara, I’m truly curious, if the slowed blood supply effects the absorption and effectiveness of a patch, how is a cream any different? It fascinates me that cream would be effective where the patch would not be, quite so much. And would what you refer to as labor be the same as what I’ve heard referred to as transitioning?
Gina Malm
Thank you for sharing your incredible insight, and for explaining The Process so well.
Thank you for sharing your incredible insight, and for explaining The Process so well.
Ronice
I am still processing my husband’s dying days and since he’s been gone I feel the need to understand more about what he went through. To witness it was frightening and confronting, and something I have never experienced before. I am asking a lot of questions, and your explanations have helped put everything into context for me. He was on comfort medication, morphine and an anxiety medication and I often think if he wasn’t on that would he have been more alert and able to speak to me? Did he really need the medication at all? I was guided by the palliative care doctor, however I often wonder about this. His body was shutting down due to extreme side effects of a chemotherapy drug and it took him five days to die in hospital after an eight month battle with kidney cancer.
I am still processing my husband’s dying days and since he’s been gone I feel the need to understand more about what he went through. To witness it was frightening and confronting, and something I have never experienced before. I am asking a lot of questions, and your explanations have helped put everything into context for me. He was on comfort medication, morphine and an anxiety medication and I often think if he wasn’t on that would he have been more alert and able to speak to me? Did he really need the medication at all? I was guided by the palliative care doctor, however I often wonder about this. His body was shutting down due to extreme side effects of a chemotherapy drug and it took him five days to die in hospital after an eight month battle with kidney cancer.
Kim Morris, MSW
Thank you so much for all of your work. In particular, I appreciate this article on the use of pain medication so close to death. I am still struggling with flashbacks from trauma during my mother’s passing. This helped. You are right that we tend to ask these questions afterwards when processing. I hope your work becomes the standard. Wouldn’t it be great if you offered a course on dying through a university? Thank you again.
Thank you so much for all of your work. In particular, I appreciate this article on the use of pain medication so close to death. I am still struggling with flashbacks from trauma during my mother’s passing. This helped. You are right that we tend to ask these questions afterwards when processing. I hope your work becomes the standard. Wouldn’t it be great if you offered a course on dying through a university? Thank you again.
Angie
I watched my Dad die as I took care of him. I’ve felt a lot of guilt for not trying to feed him but the above reading is very helpful and knowing I didn’t do anything wrong is very comforting. Still a very hard situation.
I watched my Dad die as I took care of him. I’ve felt a lot of guilt for not trying to feed him but the above reading is very helpful and knowing I didn’t do anything wrong is very comforting. Still a very hard situation.
KIM BAKER
Thank you for your words. I wish someone had told me how horrible the death rattle is and how long it can go on. I always that with hospice, dying would be peaceful, however the pain control was not to the level I expected and I feel let down by the whole hospice experience.
Thank you for your words. I wish someone had told me how horrible the death rattle is and how long it can go on. I always that with hospice, dying would be peaceful, however the pain control was not to the level I expected and I feel let down by the whole hospice experience.