Choice to not treat at 88yrs old

[SME35]

My Mom is considering stopping all medications and going to hospice as she is kinda ready to go. It's sad but I want to respect her wishes as long as they are informed. If she chooses not to treat this (or any other of her ailments) how long would she most likely have? Would she be in pain or feel horrible in a way that hospice can't help?

[AussieNeil Administrator]

Welcome to our community, though I'm very sorry to hear of the reason that you've joined. Unfortunately, CLL is a very heterogeneous disease, so it's impossible to provide you with any particularly useful guidance with respect to how CLL will affect your Mom's life expectancy, though I admire you for reaching out to find out what you can about supporting your Mom in this sad and difficult time.

About a third of people diagnosed with CLL never need treatment for their CLL; if your Mom was only fairly recently diagnosed - within the last several years, say and she isn't currently taking any medication for her CLL, then she could well fall into this group. If she is on maintenance therapy for her CLL (most likely a BTKi drug such as ibrutinib, acalabrutinib or zanubrutinib), then how long it will take for her CLL to become life threatening when she no longer takes one of these drugs will depend on how well it has removed her CLL tumour burden and her CLL prognostic factors - how aggressive her CLL was prior to starting treatment will provide some guidance to how aggressively it is likely to return.

How CLL can cause eventual death also varies depending on how it is impacting your Mom's health and again on her prognostic markers. CLL suppresses the immune system, so fatal infections are a major risk, most commonly pneumonia. CLL also infiltrates the bone marrow, reducing the production of blood cells. Again, which particular blood cells are the worst affected varies; it might be white blood cells providing protection against infection, (see above) or platelets protecting against bleeding, which in the case of an internal bleed would mean dying from blood loss. If red blood cell production is impacted, then death would be from organ death from lack of oxygen supply. How rapidly that occurs and which organs were affected would influence the amount of pain involved. If you have a recent blood test, that will provide you with some guidance on which, if any blood counts are likely to trend dangerously low. It's common to have blood counts out of range with CLL yet not be life threatening. Platelet transfusions are recommended when the platelet count drops below 10 (20 when there's an infection). Platelets are normally above 150. Likewise packed red blood cell transfusions are required when haemoglobin (a measure of anaemia) drops below 80; it's normally above 12, but becomes life threatening below 6.5. As anaemia worsens, it becomes harder to do things and to think clearly. Neutrophils are normally above 1.8, with the risk of infection increasing as they drop lower.

CLL is one of the non-Hodgkin's Lymphomas, so the CLL tumour generally causes swelling of the nodes, spleen, sometimes the liver and less often other organs. Depending where that swelling occurs and what, if any organ or nerves are impacted, will influence the degree of pain involved.

The choice of pain medication also needs to be considered; NSAIDs in particular can suppress bone marrow production, increasing the risk of death through insufficient blood cell production.

I'm not a doctor, but I hope the above can help you in your discussions with your Mom's CLL specialist and doctor to ensure that she remains comfortable.

Neil

[Bubnojay]

Hello SME35

what a special daughter or son you are to be thinking of abiding by your Mum's wishes, but at the same time caring about her suffering. Your Mum is tired and does not want to struggle on any longer, is what I get from your post. Perhaps she has other issues too.

Take the time to visit the hospice who will address your concerns, and hopefully reassure you. They are among the most comfortable places to make patient and family at peace with the end of life. It may also help while your mom is considering this asking her to write a do not resuscitate note, or get one from the doctor, as it will be sad if she passes peacefully but someone calls an ambulance, who are duty bound to try to bring her back.

A difficult subject this for many who would want to treat, but I applaud your Mum for making her wishes felt.

Best wishes

Bubnojay

[CoachVera55]

Yes what a great child because this is not easy🙏🏾 Hospice is usually the best place for end of life issues & can be done at her home. The focus is a painfree & dignified end. Definitely respect her wishes & allow her time with the entire family #GODSPEED

[Ptown]

Hello friend, you are at a very tender part of your life as you seek to honor your mom’s wishes. I’ll briefly share my family’s experience with a similar situation with our precious Dad. After dealing with bladder cancer with three rounds of chemo, then having surgery to remove his bladder, his cancer spread to his bones. Dad said that he had no desire to continue with more chemo and the myriad doctors appointments. He and mom met with the hospice services and gladly got on board.

This led to a new routine with a hospital bed being brought into their home and hospice staff coming in several times a week to assist in bathing, etc. This level of support was in effect for two months and was greatly appreciated by both my parents. Dad entered our Hospice House after falling three times and the police came to help him up and for 11 sacred days he lived there, surrounded by his children and our Mom. He was comfortable, pain-free and enveloped in expert, non-intrusive care. His death was so quiet and sacred, it was a blessing to us all. We utilized the imagery of climbing up the steps to heaven, in accordance with our belief system and the Hospice staff joined us in using this way of speaking about his death. In fact, the day before Dad died, when I called on my drive to see him, the Hospice nurse told me that Dad had started taking the steps two at a time, which prepared us for the changes we would see.

I send sincere support as you help your mother in this last part of her life. Carolyn

[DanBro1 in reply to Ptown]

The metaphor I heard when my mother passed away was to think of a sailing ship cruising peacefully to beyond the horizon.......

[Alex830]

My Mom decided against treatment, this was was 11 years ago. She lived in the Netherlands and chemo was the only option. She was 85 at the time. This was in August and she died in February. I wish I could say it was peaceful death but my mom was in a lot pain. At the end she wasn’t conscious and received lots of pain medication with our blessing. Wishing you strength for this journey.

[Canuck901]

hello

whatever she decides some counselling wouid be a good idea . she may have some sort of depression . a lot of elderly people need

support and social interaction

[Smakwater]

Hi SME35,

If you are in the U.S. and are not directing the end of life process in home personally; It is most common when one enters end of life hospice for that to be based on a qualified medical professional diagnosis. The qualified medical professional will state the condition(s) influencing the bodies digressive state. It is common that there is a measure for organ function, the patients overall condition, and need for specific medications. These measures determine a probable time line that the body can function reasonably without undue suffering given the patients choices for pain medication and life support.

It is my experience that whether a homeopathic route or a professionally prescribed influenced path was chosen, that the "qualified" persons assisting the hospice choice have been very experienced, caring, compassionate, and dedicated to the individuals wishes, comfort and needs.

To avoid any undue legal complications if you choose in home hospice, it is a good idea to seek council from a licensed hospice provider.

Much love to You and your Mom as she considers her choices.

JM

[64lusso]

I can’t offer anything substantive to your question. My Mom was perfectly healthy at 87 but had simply lived long enough in her mind. She didn’t verbalize it that way and it took my sister and myself quite a while to figure that out as she went from 125 to 75lbs over two years and lost her interest in even the simple little things she used to enjoy.

She lived to a few months short of her 90’th birthday but would have been fine with going sooner. I thank God this was prior to COVID. My only suggestion is to be understanding and flexible with her and her care needs and prepare yourself for a unique level of stress.

[BobbyFour]

It is a tough time, and hard to accept. I hope you are looking after yourself too! Both my sister (58 at the time) and my Dad (91) passed with minimal pain. I guess it is the luck of the draw, my sisters cancer shut down her liver which caused her to go from no pain, working on a quilt, to feeling a bit off, then into a comma and then passing all in 36 hours. My Dad had a great visit with me, took a nap and never woke up. I pray that you have the same experience. It is sooo hard no matter what, it certainly a blessing not to have to see them suffer.