by Molly Stevens
When I ask people how they envision an ideal death, they don’t say. “I want to die in ICU, connected to machines, with the sound of alarms piercing my brain.” Instead, they say, “I want to die in peace, surrounded by loved ones.”
I’ve practiced as a registered nurse for 38 years, and I can see it is getting harder for patients to realize this goal.
In 2001 when my mother was in her early eighties, she met with an oncologist to discuss treatment for breast cancer. She had made up her mind she wouldn’t have chemotherapy. I reassured her that in my experience, it wasn’t usually offered to people her age.
Risk vs reward
The doctor validated my observation saying the risks of chemotherapy outweighed the benefits. He supported her decision to undergo radiation therapy as the only adjunct to her lumpectomy. She tolerated it well, and there was no recurrence.
Today it is common for me to see octogenarians undergoing chemotherapy. In my role as a case manager, I ask them if they understood they had a choice to decline it. They say, “We didn’t talk about that.”
I encourage them to evaluate treatment in light of their prognosis and quality of life. But it is hard to abandon the berth once they’ve bought the ticket.
I don’t mean to disparage oncology. And it isn’t the only specialty that races down the aggressive track, like a runaway train.
Facing reality
Why can’t modern medicine face the fact that people die?
Doctors don’t mean to do harm. They want to save lives. And they believe by sacrificing quality of life now, patients will arrive at a worthwhile destination. But this is often a fantasy, destined to fail the moment the train leaves the station.
In his book, Being Mortal, Atul Gawande wonders how treatment decisions would change if clinicians asked patients:
• What is your understanding of the situation and its potential outcomes?
• What are your fears and what are your hopes?
• What are the trade-offs you are willing to make and not willing to make?
• What is the best course of action that best serves this understanding?
After answering these questions, would patients make the same choices? Or would more people limit the time they spend in clinics and hospitals? Do they know there is evidence that terminally ill patients live longer when opting for conservative measures?
In 2007, it was clear my eighty-seven-year-old mother had a severe problem. She had ominous intestinal symptoms and unexplained weight loss.
The critical question
Mom considered diagnostic testing. I asked her the question I wish all providers asked patients, “What are you going to do with the results?” She said she didn’t want surgery, and decided to let nature take its course.
Later, she changed her mind, had a colonoscopy, and confirmed the diagnosis of colon cancer. The gastroenterologist told her the tumor had to come out.
Terror gripped me. I didn’t want my mother to die, but I didn’t fear her death as much as I feared what she would endure getting there.
After three agonizing days in the hospital, Mom opted to go home with hospice. We provided her with chocolate cake on demand, symptom management, and boundless love.
The beauty of a good death
Mom died with Dad and all four of us kids holding her in our arms. I was proud of her, my family, and her medical team. She had the opportunity to ‘die in peace, surrounded by loved ones.’
I have a glimmer of hope for the future with the growth of palliative care, a new medical specialty. But their job is overwhelming. To achieve change, the entire medical community needs to grapple with end of life issues.
In the meantime, I will do my part and ask patients, “If you knew you had limited time, how would you want to spend it?”
Molly Stevens is the award-winning author of the book Boomer on the Ledge, described as “an adult picture book that explores the antics of an aging boomer.” Molly believes humor is the emollient that soothes life’s rough patches and promotes these convictions in her blog: Shallow Reflections. She was the November 2017 Erma Bombeck Writer’s Workshop Humor Writer of the Month, and won third place in the 2017 National Society of Newspaper Columnists writing contest. She is a contributing author for These Summer Months: Stories from the Late Orphan Project, edited by Anne Born.
Follow her blog on Facebook and her book has its own page, too.
After reading your post, I just wanna say that may all of use live a healthy life, Amen. Health is wealth, living a life with disease very difficult.
I just found this post and I’m glad I did. My stepmother almost died a few years ago. She had problems with her bowel and ended up in the hospital for months. After surgery, the doctor wondered if my stepmother would be happy if she lived and had to exist in a wheelchair. She survived, is confined to a wheelchair, and has Parkinsons. Medicine did save her, but she has trouble coping with life.
Chocolate cake on demand and the love of my family seems like a blissful way to leave this world.
I believe I would choose that, depending on my age. My aunt Michalena died peacefully at home – she was 94 and basically laughed when they said she needed surgery for a cancer they found. That’s the kind of certainty about death I hope we can all find one day.
Yes, Tony. Your Aunt Michalena was wise and an example for all of us. I hope our society can come to a better view of death over time. Until we find the key to reverse aging, something is going to ‘get us’ in the end. And how we respond to it can make a huge difference in the quality of our leaving.
Thank you so much for your thoughtful comment, Diana. I did not know you had worked in the field of hospice. You know from your professional experience the sacredness of this stage of life and the struggles involved. I agree that having conversations about how we choose to die are vital and I will do all I can to encourage people to have those conversations.
Thank you so much, Molly, for sharing your professional and personal experiences. I agree that these conversations need to happen with greater clarity and a focus on quality of life. Death is almost a bad word in our society, and yet we will all experience it. It serves us to think and talk about how we want to transition through this last part of our lives.
I worked for years in hospice and in grief counseling for adults and children. Dying is an extremely important part of life on all levels for those people who face the unknown and for those who will continue living. While so much emphasis is exerted on the body, meaning-making and spirit are often overlooked. I’ve seen many kinds of endings, and the most peaceful ones are usually those undertaken with conscious processing of the journey and within the embrace of love.
So glad that your mother was able to make the decisions, Molly. Three years ago, I watched my mum die. It was horrible when it happened, but I was pleased she was finally at peace given that she had dementia and had no idea where she was, who I was, or what was happening. Having been a woman who was full of life for much of her life, her last few years were cruel.
Losing someone to dementia is so hard, Hugh. You lose them twice – once while living and then when they die. And so many times the body is healthy, keeping them going while their mind unravels. This was the case with my husband’s grandmother and it was heartbreaking. It is indeed a cruel ending and I so sorry for your loss, but glad you’ve found peace knowing she is no longer suffering.
This is a wonderful post, Molly! And so many people can relate. My mom was also a nurse. She beat her initial bout with breast cancer and enjoyed five years until it came back. She did chemo and radiation. She was one of the 10% who get super sick from the chemo, but she kept fighting. When she got to the point where she couldn’t take the chemo any more, and no other treatments were available, she did resign to live out her last days. I think she wanted to fight to stay with us, but she spent her last month in hospice surrounded by family and friends (she was in hospice at the hospital she’d worked at for 30 years). I think you’re right. It’s better to forego the treatment (especially if it makes you really sick) and try to live the best quality of life you can in the time you have left. Thank you for sharing your experience <3
Your mother was brave to admit that chemo was no longer a viable option for her, Julie. My sister did the same thing. She did chemo and radiation for her lung cancer determined to ‘beat it.’ When she was so sick from the treatments that her life was hell on earth, she stopped the treatments and had several months of quality life under the hospice program. She was at home, not in an inpatient hospice program. We had some great visits and fun times during her last months.And she died in peace at home with her husband and my sister at her side. She had gotten up to go to the bathroom earlier that day so she was not bed bound for even a single day. I’m glad your mother was able to pass in peace surrounded by her loved ones.
Thanks for this informative and insightful post, Molly. Sharing…
Thank you, Bette, and thanks so much for sharing.
Your piece was very enlightening and one I agree with although my wife does not share my thought process in this regard. So, it will be an interesting dilemma when our time does come. To me, being hooked up to machines just to survive, especially if you cannot communicate with those around you is not living leastways not living in my book. So, only time will tell how our scenario plays out when our time comes. Hopefully, each of us will come to mutual terms about it when that day does come. Thanks for sharing.
That is a rough one, Irwin. All you can do is respect her wishes and expect her to carry out yours. I do hope you both have your advanced directives completed since that will help both of you when the time comes. It would be very hard for me to watch my loved one endure treatments I thought were unwise, but the fact is – everyone does have the choice. My mission is to be sure they understand ramifications of their choices.
Oh, Molly, spot on.
Thank you, Kelly. I have a lot of feelings about this as you can probably tell and I want to spread the word that there are multiple options for people when they face grave medical conditions.
We’ve been conditioned to believe that letting go is giving up. It’s a situation that none of us can understand until we experience it for ourselves or with our loved ones. Beautifully written piece that will be food for thought for many. Thank you for sharing.
Thank you, Rita, for reminding us that letting go is far from giving up. There is always something that can be done but many times it needs to be focusing on symptom management, not impossible and unrealistic ‘cures.’
Thank you so much for this post, Molly. I’m sharing it with everyone I know, many of whom have aging parents and are in the midst of or about to deal with these very issues.
I love Gawande’s questions and yours. If we stay focused on answering those questions for ourselves and with our loved ones, I think it’s impossible to go wrong. The only challenge then will be staying vigilant when the hospitalists want to take their extreme measures.
Thank you for sharing this post, Karen, and for your thoughtful response to it. It is indeed a challenge to stay vigilant under the hospitalists’ care. I could write two more essays about times when my mom and dad were hospitalized. Both situations involved decisions made and then attempts to undermine them when the family went home. It blew my mind and from then on I knew I could never leave anyone I love in the hospital without a 24 hour family presence. I hate to be paranoid but I believe my fears are based on reality.
Molly,
Having worked in the field of aging for more than 35 years I found your essay spot on! Very well said.
When a friend of the novelist Philip Roth who is now 85 years old told him that “Old age is not for sissies,” he replied “Old age is a massacre.” No one has survived yet and the question is how bad we choose to make the battle if we have a choice. In addition to reading your essay, like you I would also recommend Atul Guwande’s book, Being Mortal. Thanks for adding to this important conversation.
Richard
Thank you for your comment, Richard. I love Phillip Roth’s quote, and thinking of him reminds me of an excellent book he wrote about his father’s death, entitled “Patrimony.’ I wonder if you’ve read it? And if I was in charge of assigned reading I’d insist that everyone read Atul Guwande’s book, Being Mortal. How bad do we choose to make the battle is an excellent question we can all ask ourselves when it comes to crucial end of life decisions.
Molly – very touching and true article. The decision to take my mother off of life-support was much easier with the knowledge that she had no brain activity. I wonder what would have happened to us if that test had come back differently – I would have been looking at quality of life but don’t think all of my siblings would have been able to. Thank you for your ability to keep me thinking and grateful all at the same time!
Nurses and others in the medical profession can look at things more objectively after having witnessed so many ‘bad deaths,’ Sheri. I’m glad the decision was clear for you in regard to your mother. Of course, that doesn’t make it easy by any means.
Thank you for opening up discussion on such an important topic. I watched my father die with Non Hodgkins Lymphoma and it was a very painful experience for him and my family. However, he had 14 months with us due to the loving care of the doctors.
Last year a close family member died from pancreatic cancer. She was on her second round of chemo and died from an infection. I would have chosen the hospice route if it had been me as she had terrible quality of life in her last months. She died a mere 4 months after diagnosis.
Thank you for sharing, Brigid. Sounds like your father’s experience was difficult for all but he had compassionate and caring providers. Pancreatic cancer is the worst and there is not much benefit to chemo from what I’ve seen. I’m sorry for your losses and appreciate your comment.
Thanks for this post, it was good to read. I guess it depends on everybody individually
Very true. Everyone should make their own informed choices. I have no problem if someone chooses the aggressive route as long as they know what they are getting themselves into.
What a heartfelt read! First, I’m sorry that your mom passed away but, just as you have said, death is inevitable and we must accept it. I was trained in chemistry so I understand the inner workings of scientists – whether physical or medical. It’s really difficult to accept the finitude of life when you see many solutions to most of mankind’s pressing problems. Modern medicine still believes humans can defy death.
It has become harder for modern medicine to let people go with all the many options available today. In the era before antibiotics medical personnel called pneumonia the ‘angel of death.’ Now the angel of death is hanging out in an ICU. And it is not a gentle angel, I fear. Thanks for weighing in on the topic.
OMG! it’s such a hard thing to discuss for me, I lost a few really important persons in my life and I still can’t accept they are not with me anymore (
The White Ocean
It is hard to discuss, but I hope you can move through your grief and find a way to do so. It is hard to accept the losses and I know I’ll never completely recover. I know Carol has some wonderful tools to help people come through grief. I hope you will use them or others to help you.
Thanks, Molly, for the support. It’s true –sometimes you don’t completely recover. I have had a recent loss that tore part of my heart out permanently. But using my own tools I am further along than I thought I could be. That and the support of loved ones.
I’m glad for your mother and your family that you could be with her when she passed, Rebecca. Sorry to hear that you’ve lost your Dad, too. It was so hard for me to lose my parents, but I’m relieved they didn’t suffer endlessly. Thank you for your comment.
That’s a beautiful post. I’m glad her mother was able to be in her family’s arms when she passed. My mother was too. Everyone showed up. I flew in from Europe and my father passed while I was gone. She went 2 weeks later.
This is ideal and inspiring. Everyone wish that kind of death I believe. And I agree that no one wish to be surrounded by medical machine on anyone’s last hour. But we will only know until then.
Thank you, Eliza. My wish for everyone is they would think about what they want before faced with the pressure of a decision. Too many times I see people pressured under duress. Even after my mother decided to go home with hospice, her last day in the hospital was a nightmare as we helped her dodge blood transfusions and intensive care. It took a village and 24 hour surveillance to keep aggressive treatment at bay.
Hi Molly thank you for such a thought provoking piece. I have been thinking of my own mortality lately and I just don’t really want to keep living if the quality of life is not there. My parents and brother all died from some form of cancer and my Mum lasted for 10 years with this horrible disease. Sometimes I think she would have been happier to go earlier but she hung on until her family were all settled. Your last sentence really resonated with me. Thanks Carol for presenting Molly to us all on such an important subject.
Yes, this was such a great piece, raising issues we must all contend with one day. Now if not later.
Thank you for your comment, Sue. It is something we mortals need to grapple with, and modern medicine makes it more complicated with so many options. So sorry your mother suffered so long. On many levels cancer has become a chronic disease today and I’m all for treatments if quality of life exists. Otherwise, if a miserable existence I would want to go for quality over quantity. The main thing for me is to make my own decisions and not be pressured by a medical systems that only sees one path.
Yes this is so important to keep in mind. Its definitely something we have trouble accepting at times.
We do indeed, Ada. I like being a catalyst for conversation.
This is definitely a sad topic, but I think if I were in my 80s, I would just let nature take its course. I think some doctors don’t mention that they have other options because they want to make $ off the chemo and appointments. That’s just my take on it.
Whether conscious or unconscious, money is a part of the picture, Jenny. The trials and studies for chemo are not done on older people but only on the healthiest subjects who will make the drugs look good. No one tells our elders that when they quote the statistics.
This is such a difficult topic to discuss. Right now, my mom is highly suspected to have breast cancer and she is in total denial. She refuses to see a doctor and refuses to see even her regular endocrinologist for her diabetes check ups. I don’t know how to talk to her about stuff like this. She’s 79 and is getting weaker by the day.
I hope she has an advanced directive. It is worth a conversation, but so hard if someone doesn’t wish to discuss it. She may be getting weaker because of uncontrolled diabetes. I hope she will at least go to her primary care provider to discuss options.
I’m so sorry to hear this. It is hard to bring the subject up, i know. Maybe you could gently start by asking a gentle question about it. I asked an older friend also being recalcitrant if she were tired and ready to go…in a soft way…at the right time. I think sometimes we have to consider that… and although it’s hard, I learned i had to respect that decision. Treatments at that age are brutal. Warm thoughts to you and to your mom.
I honestly pray that when it’s my time that it’s quick and in my sleep. But it is so true that there are many doctors that try to “play God” with patients.
That’s what most people would opt for, Amy. It rarely happens, so that’s why I encourage people to think about what they are willing to go through while they are very much awake and conscious of the experience.
This post hit so close to home actually, a good friend of mine passed away in his sleep two days ago and I couldn’t be happier that he went peacefully. Thanks for sharing.
I’m sorry for your loss, Ania, but happy for your friend. That is the way most people would like to make their exit, isn’t it?
This is something I think about often. But, really I am not prepared to talk about. Not yet. 🙂
It is a tough subject, for sure. I use humor to try to get my patients to a point where we can discuss it. I tell them I only bring up the subject with people who are mortal. 😉 You can do it, so don’t give up!
There is so much truth in this post. We want to prolong the lives of the people we love for as long as we can but at what cost.
I have seen the cost way too many times, Becca. It is a very big price tag. And often does not prolong their lives but hastens it. Thanks for chiming in.
This is really something to think upon. Nevertheless, you have great points in here. Thanks for putting this article up.
Thank you, Ron. I am glad it made you think. That is why I wrote it – to spur people on to consider their own lives and how they want to live them out in the end.
I told my husband that if I ever get sick, I would rather die at home than undergo so many needles and stuff like that.
I told my husband that, too. I hope you have put it in writing in the form of an advanced directive. Then you can rest assured that he has the legal backing to support your decisions if you can’t make them.
Life isuue is very diffficult to talk about, I really don’t know how it feels like to loss someone you love. But I understand the pain.
It is tough to lose someone from your inner circle, Kelly. I’m glad you’ve escaped this grief so far. It is tough to talk about it, but so worthwhile in the end. Thanks for commenting.
AMEN to this. I am a Respiratory Therapist and it breaks my heart every time I have to extubatne someone to die in the hospital. It’s usually happens after multiple rounds of CPR and their poor bodies are just DONE. Like you, my Mom had colon cancer and chose to go home on hospice to die. It was the BEST things for her after multiple surgeries and rounds of chemo and radiation. She was only 42 when she passed away but she fought a hard battle for 4+ years and it was her wish I dies at home on her own terms and not hooked up to multiple machines. I get it, I do.
You do indeed get it, Ricc. I‘ve worked with some fantastic respiratory therapists and you’ve seen the same atrocities I have. I’m sorry you lost your mother so young. But I’m glad she had hospice and got to die on her terms instead of in a high tech environment. Thank you for sharing her story.
Thank you for sharing your story. I’m so sorry for your loss. I understand what you’re saying but I think either way it’s hard to lose someone we love.
It is incredibly difficult to lose someone we love, Heather. Even my mother’s ‘good death’ was traumatic for me. I’ll never stop missing her and relived the details of her death for months after she died. A great comfort for me was that she didn’t suffer more than necessary.
Oh my, I don’t want to think death, but if I have a limited time. I don’t want to prolong it, and make my loved ones suffer. And I want to be with them.
That’s how I feel, too, Laurence. I hope you can talk about this with your family. I could do another whole post about advanced directives so your wishes are in writing, helping to ensure your wishes are carried out. Thanks for leaving a comment.
I have learned from this post and the comments following, Thank-you! I, too, am afraid to die, although in my depressive times cannot find 1 reason to live. I’d rather stay home and be peaceful though. Using hospice for light medications. My father passed in 2015 from cancer. He had an awesome Dr. that told him at 74 chemo will only make your last 5-6 months miserable. He chose radiation, lived his last 6 months at home. I only wish he allowed hospice in the last week but he wouldn’t.
So sorry for your loss, Gladys. Your Dad had a terrific doctor who told him the truth and helped him have a better ending. I wish he would have chosen hospice, too. It is a fantastic organization and philosophy. I hope your depressive times are few so you can enjoy life.
I recently experienced a loss of a relative and it was incredibly difficult. Facing one’s mortality is something that we all must do, but it certainly is harder for some of us to accept.
It is very difficult to lose those we love, Jenn. And it is harder for some than others to accept for sure. I’m sorry for your loss.
You are so brave and honorable to have posted something like this. I know how hard it can be to post something this personal and truly, it was so beautiful. I am incredibly sorry for your loss but it seems like you and your family are just so full of love.
Thank you, Nancy. It was a very sad time, but also a beautiful time for my mother and our family. I felt privileged to be allowed to participate in this final stage of her life – it was so intimate. She smiled at the moment her spirit left her body and that is something we will never forget and comforted us.
I’m reading this as we watch my father slowly fade away. He is surrounded by his family, staff who care for him and his favourite music. It’s very hard for us but he is peaceful and calm. There are no contraptions attached to him and I know he will die in peace surrounded by loved ones. Thanks for this timely and comforting post.
My heart aches for you, Debbie. This is so difficult. It is not easy even under the best of circumstances but I am happy for him and for your family that there will be peace and love surrounding him.
I think for me the problem is that I just don’t want to die. I think a lot of people are like me–struggling to come to terms with the idea that yes, this life ends. And therein lies the rub. Posts like yours and discussions like this one help me face reality when I don’t want to.
It is not easy to face, Carol. I don’t want to die either. I am fortunate that we talked about death in my family and we still do. Sometimes we joke about it – I know that is shocking news from a humorist. Haha! Thank you for asking me to bring this important topic forward on your blog.
Thanks for sharing your personal story to educate people about quality of life as our lives come to and end. As an ICU nurse for many years I’ve witness too many futile treatments. My last years in clinical practice were spent admitting patients who were in the hospital to Hospice because no additional treatment options were available. I saw many times that patients hear a doctor say “We COULD do…” and they hear “We SHOULD do…”. The patient doesn’t ask what if we don’t do … and doctors routinely don’t suggest palliative alternatives until the patient is near death. Then I’d be called to admit them to Hospice with only hours or days to live They suffered fruitless treatments and tests and missed their “chocolate cake” moments. Your Mom was fortunate to have you as an advocate to ask about her goals for her life and then honor them. In fairness to doctors, I have also seen families who demand more treatment for terminal illness and refuse Hospice care even when recommended by the doctor. There is a need to educate people that Hospice is not “giving up” on our loved ones but instead bringing them to the medical specialty that knows how to manage end stage disease to provide comfort and honor “chocolate cake” requests as a disease brings us to end of life. Thank you Molly for writing about this important topic.
I have also seen the cases where hospice is involved for hours or days before a patient dies, Amy. And they could have had a much better end of life experience had they opted for hospice sooner. You bring up an excellent point in that sometimes it is the patient and family who won’t ‘give up.’ I don’t see it as giving up but that is the perception. I want more people to have their chocolate cake moments.
Live this. My father was able to die at home surrounded by his family. He chose that path and it was for the best. While my MIL tried chemo for the late year of her life she did realize when it was too much and stopped all treatment. There was enough time for her to say goodbye to her family and to still laugh with them before she died. I thought it was wonderful that everyone had time to say goodbye.
That is wonderful, Jennifer. The best thing about cancer is the chance to say goodbye. My sister took chemo and radiation until it was clear to her there were no benefits. She perked up and lived another 6 months under hospice care and we really enjoyed our time with her. I’m positive she would not have lived as long had she stayed the course with chemo.
My grandmother had a lump in her one remaining breast a couple of years back. Luckily, due to her previous run with breast cancer in the eighties she was well aware of her options, and opted out of chemo. She too had great results with no recurrence. I have been without insurance a long time, and thus dealing with most ailments naturally and in house. This year as I have been making the rounds of all the types of doctors with my new found insurance card, I have undergone a stunning a realization that finding a doctor that shares their knowledge and uses any heart is a very rare gem. I feel I get about as much information, assistance, and care as I would from a millennial cashier at wal mart
I’m hoping those going through the cancer scenario late in life find this post. <3
Thank you for your comment, Jess. When you find a provider who is on the same wavelength as you are, it is a treasure indeed. I have a doctor who fills that role for me and it took me a long time to find her. She is not in network with my insurance, but I will pay extra to see her. Keep looking and don’t settle for someone you can’t relate to. Don’t overlook nurse practitioners and PAs. They are fantastic.
Thank you so much for this post, Molly. I say AMEN all the way. I am also a retired RN, and I so hate it when medical staff feel the need to “play God”! My 93-year-old father-in-law fractured his hip and went into cardiac and kidney failure – but when his heart stopped, the staff “successfully” revived him with shock therapy etc . That despite our “Do Not Resuscitate” request on his folder. Thankful Thursday Week 3 Link-up.
I have to admit, Shirley, your story made my blood boil! I had to fight with a hospitalist to keep my 92 year father from having a heart stent done. And this was after a cardiologist did not recommend it. Unbelievable! So sorry about your father-in-law’s experience.
It is so true, sometimes we are ready to go and choose our own fate, which doesn’t always include medical intervention. I’m glad to hear your mom was able to make decisions about her health.
Thank you, Marysa. I think it is so important for people to understand all of their options when making their choices. Aggressive treatment is not the best route for everyone.
I’m so with you on this one my friend. Nice blog Molly.
Thank you so much for posting this, Carol. I have strong feelings about end of life issues. Thank you for sharing my voice on this crucial matter that affects all of us humans.