How do most people die?

Dear Laurie, As a BC survivor and palliative care counsellor I can say that each person is different in their transition from life to death. Pain, if under a palliative care program, is managed along with general comfort. While there is no 'typical' death, once an individual is in active decline weakness, tiredness and sleep increase and appetite decreases. I have seen individuals lucid until moments before their passing and others who rested for days until their transition to death. Ultimately an end of life journey comes down to a synchronized decline in function and respiration ceases as the support system (major organs) slow as their need reduces. Generally there is no one cause, like the heart failing for example, to address your concern. In the last hours it is not uncommon to hear fluid in the lungs and upper respiratory tract which is typically suctioned to enhance patient comfort. It is a result of the decline of pulmonary function and an indication that the individual is nearing their end of life. I hope this helps with your question and enhances your understanding of the end of life journey.

Liz.

Thank you for your kind words. I used my phone for my response and was mortified when, upon re-reading it, I had carelessly accepted a word prompt and entered councillor as in elected official! I started with a degree in Gerontology and learned that a great number of people feared dying often due to a lack of understanding of the process. I also began to train for counselling in the context of chronic disease. I then went on to study palliative care/counselling and am now one exam away from my grief counselling cert. One naturally leads to another and I am part of a team that offers seamless support and direction from diagnosis to decline and ultimately death. We have medicalized death over the last decades and need to find our way back to death being part of our whole life journey. Death doesn't need to be hidden in the back of a medical ward but rather can be embraced within the home with the right support. Just as we support a woman through pre-conception with nutrition guidance to conception, pregnancy and delivery, so too should we embrace decline and do it on our terms. When one is in active decline it is time to disregard the clock and claim swathes of time to live on one's own terms. So often people that are in active decline feel they are being dragged against their will to a finite and defined end; "the doctor says I have two months at most" for example. I help people claim that time rather than see it as a tap running. Together we turn off the tap of time and adopt our own pace. Rather than focus on dying I encourage people to focus on living be it listening to music, writing a poem of thoughts, spending 'time' just gazing out of the window or looking over photo albums. When in decline the concept of time can be a detriment to realizing the full potential of living. I encourage people to detach from their body and really live through their mind's potential. Guided meditation is a favourite with many as we relive wonderful vacations or special moments as if they are all happening again free from the burden of disease. I love my work with those in decline as I see the empowerment come alive in those who feel all is lost.

Much love sisters, Liz

Dear Karen, Without a doubt the thought of dying young evokes many emotions from resentfulness to anger through to fear and outright terror but we have it within ourselves to tame the fear and lay a foundation of acceptance and control. Addressing your fear can pave the way for a gentler end of life journey and offer you the peace that will fuel a personal and meaningful transition through active decline and death. Laurie was brave to reach out to her fellow BC sisters and ask how people die to address her fear or possibly just curiosity of the physical process and that's a great step for many. As decline occurs it is often subtle but eventually the pace starts to quicken and people often feel like they are on a speeding train or on a raft racing down a churning river (two common analogies offered by clients in decline). Our mind has the power to realign the pace and terms of our decline. Harnessing that power is liberating for those willing to take the time. Belief in oneself, once realized, is almost a new beginning despite being scheduled at the end of a life. Acceptance is the first step: my decline is inevitable. Next understand the process and engage a palliative team to deal with the physical aspects. Finally unleash your mind and detach yourself from your physical disease. When ready sit in a comfortable chair with your feet up or lay down on a bed or sofa. Relax. Maybe have a throw to keep you warm. Take a few long deep breaths and feel the weight leave your body. Allow yourself to relax even more deeply. Now picture yourself in a thick bubble of jelly that is clouding your thought and impeding your movement. Feel the resistance as you try and move. Take a breath and leave the bubble. Push yourself away from the weight of the jelly. Stand beside it and feel the lightness. See life clearly again. What are your thoughts? Picture a place that you love--a field or perhaps a family cottage. Go there free of the burden of disease. Feel the sun fill you with energy. Feel the freedom of movement.

That is, in part, a guided meditation exercise. People that engage their mind report needing less pain management and greater peace of mind in their transition journey. Fear is normal but you have the coping skills on board. I will help you in any way I can just ask. There are no wrong questions or silly fears. As for me, despite having a reasonable prognosis on the BC, Tamoxifen nearly killed me. I am of the 2.9% of women that had a hepatotoxic response and am now left with stage 4 cirrhosis--and I don't even drink! Mine was acute onset over 4 months and I now need a transplant. I am holding my own and both of my sons are a match but I can't receive a live liver transplant until I have been cancer free for 5 years (medical ethics).....but they project my liver will only last another 1 and I am not quite 2 years out of cancer so the numbers are not adding up for me. None of us know when our end will come but preparing for that stage of our journey is empowering.

Much love, Liz

Thank you for your insight and also sharing your personal story.

It was only a few months ago I was having some anger issues that just came out of nowhere. I figured my life is more than 1/2 over so maybe it's time to start embracing death. So I did. Then, my husband received a small cell lung cancer diagnosis last month. I do believe in God, and I believe this was his way of preparing me for the task ahead.

If you don't mind though, we have a 33 yr. old daughter and a 26 yr. old son. I know they are seeing this as the clock ticking. I feel horrible for them facing losing their father at such a young age. How do I help them?

Hi Ctmbsikia,

I will address your concerns this evening as I am off to work right now. I certainly can offer suggestions. For now, until I get back to you, picture your family as joining together on a good size patch of grass, say an acre. As a family start designing your space. Draw it out together if that feels right. Now, do you want to fence it? By fencing your acre you can keep others out and have a private journey with just family. You could draw in a guest house suggesting you welcome friends and community to visit. Your family will no doubt have thoughts on this. Medical intervention? Do you want a big garden or rather small just to address palliative issues--as you plan this garden you can speak about DNR provisions, feeding tubes, pain relief etc., you can also address trials for your type of cancer and discuss as a family when you may feel you have done enough at which time you may reduce the size of the medical intervention garden, you may want a pond--there you can feel free. In the pond you might plan unstructured time like reading, knitting, with the pond symbolizing your ability and/or desire to stay active. Each planting or design feature can be discussed as a family. Your family might articulate 'but Mum you can never give up' or 'I miss when we went for walks in the local part." So draw trails on your acre to remind yourself and assure your family that for now you can still go for walks but when the time comes that you may not walk as a family you can treasure memories. The key right now is capturing time and giving it meaning. I have to head out but I will be back to you in a bit later this evening.

Sending care and support your way, Liz

Hi Momkidsgrandkids,

Acceptance is a good place to be as you journey through a chronic illness. It allows you a greater clarity and perspective on your circumstance which further allows planning and empowerment. As for the specifics on 'progression' brain mets are different for everyone depending upon their location. But rather than focusing on the what ifs and whens try and relax and to some degree surrender to the process of decline. By that I mean you have had progression and the radiation may well help you for a good deal of time. In the time that treatment allows you to retain a good quality of life--live! Talk about what you love doing with others in your family and do it. Share your thoughts on your journey. You may ease the fears of others by sharing your thoughts with them. That being said, people with brain mets can live for years but having a clear vision of how you want to navigate your journey will lift the burden of worry for you and those that love you. As your symptoms increase or begin to affect your quality of life your doctor may suggest initiating a palliative care program. It does not mean you are in active decline, it means that your symptoms are becoming bothersome and intervention can relieve some issues and enhance your comfort and function. Being mindful of your options can be liberating as you can call upon them as necessary and know that you have support. If I can help in any way please do not hesitate to ask.

Cheers, Liz

Canadaliz...Thank you so much for your input.You are providing so much help to so many ....because the reality is that death is something we all have to face .

I thought I had the acceptance down, until I thought I had progression. Then I spent those worried days in denial and started the grieving process all over again.

Freaking roller coaster ride.

Sandi, thats very insightful about QOL.

Laurie, as others have said, it varies but I wonder the same thing. When I was first diagnosed with bone only mets, I was afraid of brain mets, then we found and successfully treated brains mets with very little change in daily life. However, I’ve seen many friends pass away (here, FB group and cancer center group), some within a few days of posting. The rate at which things can turn is shocking and some of the quickest declines I’ve seen are when nothing really works anymore and the liver is more involved with mets than not, especially, it seems, in the younger crowd. Also, fast growing, unknown brain mets that’s result in a serious stoke or seizure have been major contributors from my own observations.

Hi, Liz. I'm glad you came back and saw my post and replied. After I blurted out that post (not that much thinking involved), I, AFTERWARDS, did the appropriate research. I looked up the meaning of chronic and read various opinions on the web. It seems to be a matter of semantics, mostly. There was even a thread in 2014 on BCO discussing just this topic. (Divine, you posted to it if you remember.) I just think most MBC people react as I did. NO IT IS NOT CHRONIC. But these are just words with varied meanings to different people. Your description of the stages makes sense. At the beginning, it would be nice if patients could think of it as chronic for their own sanity. I think medical providers push this idea for that reason. Or maybe to protect themselves.

I also went back and read through your previous posts. How did I miss the thing about your liver? I have so many questions. Is that true about no transplant until five years out from cancer? Is that also the case in the US? Could you move? I find it appalling that you have two eligible donors and can't get a transplant. What is the reasoning behind this rule? Of course, you can't donate your liver but that is not what you want to do. Do they know how common it is for someone like you to survive for (way) more than five years? I'd love to know their justification for this because I just don't get it. I know I would not be as calm as you seem to be about it. Can you fight it? Is there some appeal process? They seem to be killing you with their stupid rules and it makes me crazy.

"Chronic" is also used to describe conditions that are on-going, rather than "acute" conditions that are very temporary, i.e. a strep throat that you treat with antibiotics and it is over. Some conditions that are described as "chronic", other than MBC, can indeed kill you, although they tend to be better managed than MBC, ie hypertension, diabetes. Even HIV.

MBC is "managed" and "chronic" until it isn't.

I would agree that it is a matter of semantics. I am okay with saying it is chronic in the absence of a better term. Anyone with this diagnosis also knows it is considered incurable and terminal.

EDITED TO ADD: Acute conditions can also kill. Strep throat untreated does kill. Pneumonia and flu are acute and they can kill also. So I think the distinction is that acute = sudden onset and quick resolution (whether that is cure or death) versus chronic = ongoing, long term, managed with treatment.