Sunday, June 21, 2009

Deenie update

Deenie is still alive, sleeping a lot more, weaker. She had a bad moment of panic the other day. The hospice is still not being helpful; they've now given her liquid meds but she really should be on a morphine drip at this point.

Please continue to remember Deenie in prayer as she slowly takes her leave. Mary, Mother of God, hold her in your arms.

Panagia Eleousa


Anonymous said...

Why a morphine drip?

Kirkepiscatoid said...

Prayers from here.

Also for you. It's hard to let those we love slip away. I am constantly reminded of something my priest told me when I first started having to deal with my retired friend M.'s dementia..."The more you are having to give up with him, it is going to God...and hey, you trust him to take care of it, right?"

It made me realize my grief was "control based." I wanted to control something that was not controllable. I wanted MY buddy just the way he was, almost like a meal made to order. Not possible!

I know you trust God to take care of Deenie. It's just hard to give it up!

Ken said...

I remember sitting in the hospital room where my mother was dying in February 1992. I read Psalms and scribbled in a notebook. I have lost the notebook, but I recall one of the entries: "God, do your job!" He did, but when he was ready, not when I wished it.

I don't know Deenie but I know Jane, and I want Deenie to go home for Jane's sake as much as for her own.

Paul said...

Ainsi soit-il!

David@Montreal said...

dear, dear, Jane
thank-you for the update
prayers continue to be offered here, not only for dear Deenie, but for those blessed by her life and witness, and most especially for you, dear sister

je t'embrace


Jane R said...

Dear Anonymous, It would be nice if you identified yourself. A partial answer: as you may know, when patients are in hospice care they are in the last stages of terminal illness. One of the functions of hospice --there are other vital ones including spiritual care-- is to offer palliative care, in particular medication for pain. What I mentioned happens to be indicated for the stage of pain and terminal illness at which my friend happens to be. She has a rare form of cancer that is not treatable and a huge tumor that grows visibly larger every day. Note: I am not a physician and am not pretending to be; I hear this information from her caregivers and health advocates who are concerned about my friend's level of pain and weakness and I also have experience caring pastorally for people who are ill and a fairly good knowledge of hospice and its workings.

Please identify yourself next time, at least by a pseudonym or some kind of descriptor. Thank you.

Caminante said...

I am so sorry that hospice is not being a better advocate for Deenie's pain management. I haven't yet worked with hospice here but up north, there was one woman with whom I always worked and she was fabulous. I pray that hospice will get with it and be more pro-active for Deenie's pain -- given where she is on her journey, they should not worry about addiction which always seems to lurk in people's minds.

As for anonymous, a drip measures out the medicine at specified time intervals and can provide a much better treatment than oral medicine.

Prayers for you, too, so far away.

word verification: scediti -- surely some verb form in Latin (like seated?).

Helen P. said...

If by "morphine drip" you mean morphine delivered by a PCA pump in which an hourly bolus dose of morphine is given and the person then can self dose more according to pain levels to a lockout, or if you are referring to a simple IV push of morphine hourly, you would need to know that IV morphine is not generally used in hospice. That is because the IV device needs to be changed every 96 hours, to avoid complications of infection and pain from infiltration (when the vein gives out and the morphine goes right to the tissues). Having to put in these devices (or things like PICC lines) isn't generally done. With IVs, the patient keeps getting stuck with the IV catheter every four days to start a fresh IV, and staff may not able to get restuck due to compromised blood vessels. Repeated sticking on a dying person to get in an IV catheter to set up a pain pump is considered counterproductive."Morphine drips" are actually not the treatment of choice in hospice for pain. That is why oral medication is used and why topical pain medication like fentanyl dermal patches are used. It is not big deal for a hospice patient to be on a fentanyl patch- which comes in several doses; a 12 hour extended release oral mode of morphine; and a dose of hourly oral morphine for what is known as breakthrough pain. Hospice patients also receive low doses of other agents to control nausea. Then, it is very common for hospice patients to receive ativan for anxiety. Most hospice staff combine all these liquids together and then through an oral hypo give it to the person in their mouth. No pain from an IV and it is all pleasantly flavored. Even if the person is not fully alert, some liquid can safely be placed in their buccal fold (cheek) where the medicine is very rapidly absorbed.

If the person is at home, hospice nurses train the prime caregiver (having a prime caregiver is a requirement to receive hospice care at home) how to give these medications. It is the caregiver's responsibility to call hospice if the pain relief efforts are not working. Hospice doctors write for huge amounts of painkillers as part of their job and have no problem whatsoever writing for enough medication to cover reported pain on the part of their patients. They can face malpractice issues if they don't.
Most at-home hospice patients simply keep a bottle of mophine at bedside with a little, measured eyedropper so that their caregiver can give them the the ordered doses for breakthrough pain.

Most hospices ae very judicious in making sure their patients are comfortable. They can have their accreditation pulled and their state license revoked. In addition, as a business, for profit hospices cannot afford to have a reputation for not solving pain dilemmas. The word of mouth would kill off their business.

It sounds as if the caregiver in your friend's situation may need some additional coaching or reassurance that it is okay for them to give the medicines. Many caregivers are simply afraid of what seems to them to be the huge amount of drugs. The "huge amount" is really normal for hospice, but they don't know it.

In addition, perhaps your loved one is not being upfront with family about whether they would rather be more alert with some pain, or if they truly want total pain control. Sounds like a family meeting with hospice is in order, something hospice always welcomes.

Something is clearly very off with the reporting of this problem.

Jane R said...

Helen, see my most recent post about this. There are details of the situation that you don't know, and now there has been a new twist. Thank you for writing.

Kirke, thank you. I don't think my grief is control-based. I am too far away to control anything. I am not in deep grief. I am sad at the loss of my friend and I am responding to her last words to me when I visited her for what we knew would be the last time: she wants death to come quickly. She is weakened and in pain from a terminal illness, she is ready to go, she is at peace with her loved ones, she has lived a good life. I am accompanying her in prayer as best I can --with the help of all of you, for which I am grateful, as is Deenie-- and offering some emotional support to one of her friends who is nearby geographically.

Caminante, thank you, my sentiments exactly.

Jane R said...

P.S. Thank you all very much for your good wishes and prayers.