When it really IS a matter of life or death

March 5, 2015

white flowr copyFaith.

We say we have it. And yet, most of us do everything we can to hang on to every last vestige of this life.

It’s as if faith and death are not connected in any way–maybe we just don’t want to test that.

I’m talking about the treatment of terminal illness, of course, something we become more familiar with as we age. If it’s not our parents or grandparents, it’s our friends, and we’re often faced with a ringside seat to their choices and the outcome of their choices.  They can do nothing and die sooner. They can pursue aggressive treatment and live longer but with impaired quality of life. Or they can pursue aggressive treatment and get quality of life back for a year or two or more. Or, as that beautiful young woman in Oregon did, in some places they can choose to end their own lives.

How to decide?

It’s a crap shoot, and truly a matter of life or death. It’s important, too, because we might face these choices, ourselves, one day, if we haven’t already.

Stanford University School of Medicine released results of a study last year that said more than 88 percent of physicians would decline aggressive treatments for terminal illness, such as aggressive chemotherapy for terminal cancer.  The researchers noted that there is a point where high-intensity treatment is worse than the effects of the disease. That is, if you accept the idea that we are all mortal. Physicians, apparently, accept that fact. The rest of us tend to do everything we can to hold on to this life, seeing death as the far worse fate.

After all, this is the only life we know: our family, our friends, our activities–we want them to continue as they always have. And if we’ve got a chance at that, most of us are going to take it.

i_can_do_it-1801“Fight!” our families beg us.  “I’m fighting as hard as I can,” we say.  What we’re fighting is the onset of the unknown.

Life after this one? It’s unknowable.  We’ll take the known, thank you very much.

The study said noted that most Americans would choose to die at home without aggressive, life-prolonging measures.   While that’s all well and good in a study, it’s much a much harder choice for patients who stand a chance of more time–functional time– if they can only get through aggressive treatment.  IF.  That “if.” It’s a fine line we still don’t know how to navigate.

But the alternative? It terrifies many of is. Mention “hospice” and many of us completely freak out, because we know what that signifies. So treatment often seems like the least frightening option.  But maybe it shouldn’t be.

A doctor with terminal cancer interviewed for the study said, “I will accept further treatment only if it enhances the quality, not the quantity, of the days I have left.” Yeah, good luck figuring that out.

watercolor skyChemo is a vicious beast, killing everything in its path without differentiating. Good cells and bad, they’re all annihilated and as good cells disappear, those awful chemo side affects crop up. Secondary infections of all kinds make quality of life questionable. Conditions like neuropathy and chronic pain, infections or new cancers as side effects of chemotherapy are not uncommon.

Aggressive treatment ain’t for the faint of heart.

But there’s plenty of evidence that some people do get through the horrors of aggressive chemo and buy a few more good years, years with acceptable quality of life.  The problem is that medicine can’t tell us who will succeed and who won’t.

The study said that many physicians recommend aggressive treatments, but that’s not what I see. The doctors I see offer patients the options and allow them to make their own decisions. But these are decisions we’re poorly equipped to make.

One hundred years from now, or maybe even in our children’s lifetime, medical professionals will look back on slash and burn chemotherapy and shudder at how primitive it is.

But right now, it’s all we’ve got. State of the art.

soul fm elsewhereBut the crux of the matter, to me, is how we view what comes after this life, and most of us have always had a problem with that.  Those of us who believe that life goes on still, for the most part, find it hard to live as if we really believed it. Or to act on that belief.

If we really, truly believed that our souls go on, that the spark that makes us unique, that’s the heart of us, continues, we might not undergo those horrible treatments.

My own struggle with issues of faith and that fine line of when to stop treatment began 15 years ago when I watched my mother go through her final illness. She wanted to hang on to this life at all costs, and it did cost her, dearly. She spent the final year of her life in the hospital. It wasn’t easy on her and it certainly wasn’t easy on her family.

shell in sandLooking back, I can see that life is a series of transitions that are almost unnoticeable when we are younger.  But when I turned 60, my point of view changed, almost like completing a section of a book and turning the page to a new one.  Now, I am hyper-aware of the many more days behind me than ahead.  I’ve begun to see that that in some of my friends, too.  We consider lifestyle matters now that were never on the radar screen before –such as access to good medical care. Decisions about aging in place, long-term care insurance and other things we’ve never had to consider are now topics of discussion.

It’s obvious that our generation is struggling with core issues we never entertained before.  And decisions about aggressive treatment end of life are key among them.

Because for us, at this age, it really is a matter of life or death.

HERE is an insightful essay about radical cancer treatments by a woman who lost her husband to brain cancer.



59 comments on “When it really IS a matter of life or death
  1. How to decide really is the question. I have known people who said they would not undergo chemo but when that moment came they changed their minds. I find the doctors’ study, which I had seen earlier, to be very telling. My father-in-law, a surgeon, chose to forego any treatment and died peacefully from his lung cancer, after spending most of the time at home.

  2. Sorry, Carol, that I couldn’t read all of this post, but I get what you are saying. I watched my much beloved uncle die a horrific death with pancreatic cancer. I wish that on no one, and neither did he. He chose to die at home, in his own way, among his books and family with hospice making him comfortable.

    I don’t disagree with what Dr. Kevorkian used to do. Agonizing pain should be tolerated by no one.

  3. Kim says:

    I recently lost my grand mother and I miss her dearly but I am confident in my knowledge that she is in a better place. Whether it’s expected or not, it is still hard.

  4. ryder ziebarth says:

    I turn 60 tomorrow and yesterday, a a celebratory lunch, younger friends asked me how I felt about the coming of the BIG DAY and I said ” differently then I thought I would, ” for all of the reasons you posted here so astutely ( you are so damn smart, Carol.) After helping my Dad die this fall with my mother, two siblings and their spouses by his side, and having only one child myself, I think I now know what I would do.Thanks for this post.

  5. Hi Carol! As I think you know I’ve written about this issue from a couple of different angles. So much of it IMHO is what a person truly believes about what happens after we are gone–AND–how much influence a person believes they have while they are here. While I haven’t been faced with aggressive treatment for cancer, I have read MUCH about how much of the time it doesn’t really extend the quality of life. My sister is currently doing her own experiment on this issue so it is somewhat personal to me. I’ve also seen others with brain tumors who recovered miraculously by using alternative treatments. I don’t believe there is any guarantees with or without and tend to live my life as thought when it is time for me to move on from this planet I will leave regardless of the medical treatment. But then, that is something only each of us can decide individually. ~Kathy

  6. Kathy Harter says:

    Your timing is remarkable. I am trying to help my niece understand that she needs to tell her mom its ok to stop treatment and let the time she has left be more peaceful and calm. It’s so clear to me and equally unacceptable to her. Helping someone you love transition to the next life is a powerful experience and for me, seriously reduced the pain of losing them. It is not “giving up” as some view it, but instead making a very personal decision on the quality of ones end of life experience.

  7. Jeanine says:

    I’m not really sure what I would do in that type of situation. I was 16 and watched my mom suffer and die from cancer and I know for a fact she would have chosen to end it like Brittney if able. I’m just not sure what I would do honestly.

  8. Lana says:

    I think one of the hardest parts of this decision are the “what if’s”. What if the aggressive treatment works for me? Human beings have a great survival instinct that kicks in when there is any danger. While I find the results of the doctor’s study interesting, I would be curious to see what they did if actually faced with the decision, rather than in theory. I do have faith that my soul will go on after I die, but I’m not ready to leave this life yet, so that would be a struggle for me. Such a thought provoking post Carol!

  9. Very inspirational post Carol! Great share 🙂

  10. Laura Kennedy says:

    I haven’t talked about this before. I no longer believe in life after death. My heart has stopped a number of times over the years, and everything just WENT.

    No fade to black, not even black. Just

    Like that. (Then end of the Sopranos? Like that.)

    Also? Not into suffering or prolonging. I recently read that article, “How Doctors Die” and I’m on board. I have told my family, when it comes right down to it, no aggressive measures. Thinking of getting a DNR tattoo.

    So long, and thanks for all the fish.

  11. Carol, What a beautifully constructed essay on an important and sad subject. I found out two weeks ago that my effervescent 90 year old mom has terminal cancer. She is beyond all possibility of treatment and all us, esp. Mom, are grateful for that. I am heartbroken she will die of cancer. My dad died taking a nap. Anyway, I’m trying to face it head on and your piece helped!

    • Blessings to you all, Barbara. To the extent this post was helpful, I’m grateful for the opportunity to serve. I will hold you all in my heart during this difficult transition.

  12. Faith is hard for me at times. We lost 5 family members last year and each were different in either their will or want to fight and of course we wanted them to fight even when they were ready to give up the fight.

  13. Diane says:

    I have a firm belief in what comes hereafter. And yet, I would still fight to stay with my family here. You’ve raised some fascinating questions. Must have a think . . .

    • Yes, this is one subject on which we ought to at least have passing familiarity with our views…and I don’t mean that facetiously, because I’m not sure I know yet, either.

  14. harriet says:

    It is hard for me to say what would be best until I have walked in those shoes I guess.

  15. Toni McCloe says:

    What a difficult issue! Like the people mentioned by Walker, I too believe I would never accept chemo. But who knows how I would feel if I were ever faced with that choice. Your dpost was insightful and very thought-provoking.

  16. I work with the elderly and I think those that fight so hard to stay do so because they have unfinished business, great fear or they don’t want their loved ones to be hurt by them choosing not to fight.
    My best friend, 44 years old fought like crazy, tried every experimental treatment that was available. Her quality of life was awful and she knew there was no cure, just the possibility of a little more time and she wanted to live long enough to see her daughter graduate high school and get accepted into the college she was dreaming of and to see her son attend his first day of first grade. She didn’t make it for either:(
    Having seen it over and over up close and personal if I was diagnosed terminal with no chance of a cure, I think I would choose quality over quantity.

  17. My mother’s 3rd husband was a doctor in Boston who was diagnosed with bone cancer. He reluctantly agreed to chemo, had only ONE treatment, and changed his mind. He died in a drug-induced coma at home, three months later, after saying all his goodbyes. My SIL, on the other hand, fought all sorts of cancer for 10 years, she got to see 4 grandchildren born, but her struggle was hell on the family with everyone waiting for the other shoe to drop for over a decade. Maybe if we were all more comfortable about Death being part of the process of Life we’d make the most of what time we do have left. Every time I think about Death I think of all the greater people than I that have died before me and maybe the chance to talk with them in the hereafter. Always looking for an interview….. Hahahaaaa.

  18. Estelle says:

    It seems everyone wants to fight to the bitter end. My sister’s mother-in-law fought her illness till the end and never once mentioned passing away. I think other culture’s have a more well-rounded view of as my hubby calls it “the circle of life.”

  19. Lenze says:

    For me, I have to think I am soul living in this human world. These world is only temporary, but be thankful for the life you live and live a life that would leave a legacy you want to pass on or be remembered by.

  20. Nora says:

    I have seen so many patients and their families suffer for months and years when aggressive treatment is given to patients who are dying. The extraordinary stress caused by what is often ineffective and painful treatment for a terminal illness is sad. Our children have been given explicit instructions to reject any such efforts if we should be afflicted with a terminal illness. Perhaps eliminating such measures may lead us to a faster death, but that time will be a lot more peaceful and bring more beautiful memories. Hospice is an extraordinary program that offers peace and comfort to many patients and their families.

  21. Janie Emaus says:

    I’ve been through this decision with many loved ones in the past few years. Sadly, they all lost their lives. I’m not sure what I would do. And I pray to god I never have to make that decision.

  22. Britney says:

    I love this! Especially that quote about ending up elsewhere! Love it!

  23. We all have such different paths to walk. I cannot comment on this in detail because I am still in the process of letting go of the most recent death of a brother. I have experienced the death of 5 people in my family of birth. Too many, too close. I’m focusing on living.

  24. I don’t know if anyone really knows what they would do in this situation until put in it. Circumstance would have a big say in my choice. But, I do feel like it is everyone’s individual choice to make. This is a very thought provoking post! 🙂

  25. Carol, thank you for your very thought provoking article. I wrote a book called, Healing Through the Chaos: Practical Caregiving, and I talk about the difficult decisions we face as individuals and family caregivers about where the balance is between quality and quantity of life. My dad had 11 brain surgeries over a 2 year period. Each surgery leaving him with a lowered baseline level of functioning. After awhile, we made the decision, no more surgeries. It’s a tough call sometimes.

    This body was diagnosed with cancer for a 4th time and although I had surgery, I will NOT do chemotherapy. I’m tackling this through alternative means as the side effects, for me, aren’t worth the treatment. I am learning so so so much about the medical community in the process:-(

    Thanks for the important reminder that we call need to plan for and make the decisions before they are really needed.

  26. This is a challenge my father in law is dealing with.

  27. Geanine says:

    Thanks for this post, it left me wondering what I would do in a similar situation. Having just lost my grandmother I realize how short life can be.

  28. A beautiful, thought-provoking piece, Carol. My MIL would be far better off if she were allowed to just go. Thankfully she’s fairly incoherent much of the time so she doesn’t know that and is okay just being whatever it is she’s being. As far as life after death, I do sincerely have faith that the best is yet to come. (I just don’t want to get there til I’ve accomplished a bit more… and know my family will survive the heartbreak of me passing.)

  29. I worked for a hospice for two years, counseling families, explaining the benefits of hospice care vs what they could expect with further treatment. Such a hard thing. Most patients would go on hospice much sooner if it weren’t for well-meaning families begging them to fight. Working for hospice turned my world upside down and made me realize that there are worse things than death. Sitting with patients and holding their hands as they took their last breaths has taken away my fear of dying because I know that we only die a physical death. Great post, Carol.

  30. K. Lee Banks says:

    We watched my Dad waste away due to an aggressive strain of lymphoma back in 2002, even with treatment. He spent his last week of life in a veteran’s hospital, surrounded by family, until he slipped into a coma and never recovered. But we were all there together and had time to say our goodbyes.

    My Mom learned she had breast cancer in 2009, went through treatment, thought she beat it – then on July 1, 2011, she learned the cancer was NOT gone. She had a mass in one lung, and spots here and there throughout her body. She was tired of fighting, tired of hospitals and treatments, just tired…and missed Dad…and she wanted to go home to die. We arranged for hospice – the house was full of family and friends, coming and going over her last few days of life. Some of her last words were “I’m ready to see my Lord and my Ben.” (My Dad). She died in her sleep on July 7th, with my nephew by her bedside holding her hand, as we had all been taking turns sitting with her.

    We believe there was rejoicing in heaven when Mom and Dad reunited…and we all look forward to seeing them again some day!

  31. I always wonder how I’ll face death when it comes! With parents approaching their ’90s, I know that our family might have to make some hard choices in the future. I don’t believe in the use of aggressive methods. However, it’s sometimes difficult to have family members agree on what steps to take, especially when the ‘patient’ can’t make those choices for hersef.

  32. Julee says:

    Perhaps the question becomes, do you want to know? We should all be living our lives as if each moment were our last. Maybe the journey should be one of hope each day and the quality of life rather than trying to make these decisions and change our direction?

  33. Liz Mays says:

    I really hope what you said about the treatments we use now being considered primitive in 100 years. I pray! It’s definitely something to think about — the quality of life issue. I suspect I would go aggressive at first, but I’m just not sure I’d continue it super long. I really should put this stuff down in writing so my kids know…

  34. Chloe says:

    I’ve seen many people talked into aggressive treatment by their family members, particularly their adult kids. I’ve seen families torn apart when mom or dad wants to decline aggressive treatment. This is a conversation a family needs to have before illness strikes nor after when emotions are running high and everyone’s judgment is clouded.

    Many decades ago death was moved to hospitals and became seen as a failure of medicine rather than the inevitability it is. Now doctors and patients both are expected to fight whether or not it’s in the best interests of the patient or not.

  35. I have been thinking a lot about this myself lately. Do we go with the medical treatment that may give us relief to only die from an unforeseen infection or live the life we are leading until it becomes impossible. That is the question that I can’t seem to find the answer to.

  36. John Gatesby says:

    Thank you so much!!!! This is one of the most inspiring, thought-provoking articles on this subject, I have already started exploring my lifestyle, the options that I have and the choices that I have been making. Quality of life matters and we all are mortals but it always pays to select right lifestyle options and live a comfortable life than suffer in the long term.

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