I read this article today on dying with dignity. It was about a center for Catholic Nuns, who are surrounded by fellow nuns and priests, choosing to die without much medical intervention. A topic whose time has come as baby-boomers enter their senior years. It is fraught with misunderstanding and potholes. Not the least of which is the fear of "killing old people", and not providing health care based on age. But the fact is that millions of very old people are put through tortuous tests and procedures at the end of life, without any alternative. We simply have not thought through the medicalization of the dying process. It is a huge drain on our health care system, and the results are always the same. No one is going to get out alive.
So what to do?
Well, for one, we need to educate ourselves on what a "good death" would look like. Hospice is a wonderful program, but I think what is needed is more information before we get to the end stages of life. Maybe we need to look at it from a life-span perspective. A part of life, just as important as the mid-life or child-bearing age. Actually train people, as part of a curriculum, to be care-providers for only this stage of life. We have full course studies on early childhood, maybe we could do the same with end-of-life issues. Maybe we could provide beautiful centers, complete with music, outdoor areas, large windows to look at beautiful landscapes, massage, acupuncture, spiritual advisers, entertainment, intellectual stimulation, and most of all understanding of the process of dying. Taking away all the procedures and medications, not used for pain control, should free up money for these centers. We also need to keep people home when we can. Let them be surrounded by what they know and the people they love. Dying doesn't have to be the fearful, painful process it has become. It can be a time to celebrate a life well-lived. We just need to learn how to do it.
57 comments:
I plan on raging against the dying of the light. That's just me though. Of course there's definitely a time for "giving up," but as long as I have options left, I'll be going for them. You never know what will work.
I agree. I know that I don't want to be poked and prodded as I die......
The dilemma is how to do this in a society that is so prone to sue the medical community. And those among us who fear their own mortality and want extreme measures taken to prolong their lives at any cost (not just financial).
As always, you have touched a place in my soul with your thought-provoking words. I have a fear of dying...not the afterlife, as I am a child of the King and I know where I will be. But the actual dying part of living. I've seen and heard of some awful ways to go. I really like your idea and I second the motion!
scarlethue - I think that is true when you are young, but the old old, as they are termed in human development, may feel differently, we just have few options for them.
Kathy - I think that's why we need to do some in-depth studies on what it means to die. If the fear was removed (see NDE's), they might feel differently. Besides it should be an individual choice. If they want extreme procedures, they should be able to get them.
Momma - I think we all fear death. It's scary. But facing our fears often makes them go away.
I don't think I would want to live the last days/weeks/months of my life in a hospital. For me, even now, I think I would want to be at peace in my own home with my family and favorite things.
It just seems like if the end is near, wouldn't you want to enjoy what you can with what's left rather than be a number on a clipboard in a hospital?
I've read some studies about how you "know" when it's coming... I hope that I "know" so that I can leave this world from the comforts of my own bed, wrapped in the arms of my love.
I think it would be great if we could have wonderful centers for the old old like you described. I don't want to die in a hospital with tubes in my body and drugs in my system. I want to take great care of my body now so that when I am old old I can just smoke some pot and die peacefully at home in my chair.
Such a vital (vie=life and death is part of life) message. The fundamental anxiety western society has about ageing and death are a real obstacle to how we treat the aged and how (or not) we help them die. Early education on all of this, as you say, would be very helpful.
Being with the aged and the dying (as we often are not) these days also would alleviate some of the fears that caretakers have - and some of the neglect that is the result of those fears.
I'm so glad a gerontologist, such as yourself, has found a forum to speak out. You have so much to impart. We are so ignorant here about death and dying. And our ignorance results in cruelty to our elders.
Have you read any of Stephen Levine's works about dying and death - they are beautiful, helpful, inspiring.
Your idea about intervention-free (technical that is) centres for dying sounds divinely inspired to me . . . Maybe you should open one?
Keep up the good work!!!
Rachael - I agree. I have read that you know. One religion believes you know a month before you die, and use that time to prepare.
Jenin - LOL! Not a bad idea.
I just went through this process, first with my step-mother as she died of breast cancer, and then with my dad as he was taken away bit by bit by Alzheimer's. It's about quality of life, nothing is more tragic than watching a loved one go through useless procedures to keep them in a suffering state. Each case is individual. Hospice can be a positive experience, believe it or not. We were grateful to see them both go in the end, so the misery would be over and they could go to a "better place", or so I choose to believe that they did. Good post, DEATH WITH DIGNITY, is an important subject.
A sidenote: my mother died sitting in her favorite chair in her sleep, Bible in her lap, at 78, no struggle, now that's the way to go.
Bonnie - Thanks - hmmm maybe I should do some research...
Elizabeth - My father-in-law went to bed with his wife of 65 years and just didn't wake up. Can't get much better than that. Your mother was blessed, I think.
I already posted - but just one more thought. *Dignity* is such an important part of this as your title indicates. The word dignity comes from the French root "digne" which means "worth" or "worthy". Wouldn't it be marvelous to age and die knowing our worthiness is valued and respected. There is such a lack of respect for our elderly in this culture.
Bonnie - My thoughts exactly. It would be a learning/teaching process that begins when we are born. A full process of living and dying, all of it respected and revered.
Nancy, that's true. I was looking at it as a "if I were dying today" kind of thing. But if I were like my great-grandmother, who lived to be just shy of 98, it would be a different story. Or like my grandfather who fought cancer for so long he just couldn't fight anymore. They were both lucky to have their families around them at home when they passed. I'm not afraid of death, I just have a lot of live to life.
Hospice nurses and volunteers are some of the most amazing people I've ever met. They truly understand the needs of the dying person as well as the needs of their loved ones. I don't know whether it's training or experience that makes them so good at what they do (or maybe it's just the nature of the type of person who chooses that kind of work), but every single one of them I ever met was absolutely exceptional.
My dear friend's only wish was that she didn't want to die in a hospital - she wanted to be home with her daughter and surrounded by the people who loved her. I wouldn't have been able to make that wish come true without the help of hospice, and I will forever be grateful to them for that.
Lots of silk pajamas, soft light, pets - beauty therapy. I've thought about this for a while. We just don't care enough about the ones on the way out.
scarkethue - I knew what you meant, that you would fight while you are young, and so would I right now. I'm really glad your grandparents were able to be at home. So many are left in hospitals, in unbearable conditions, because they lack family or a home. Hospitals are very noisy,impersonal places. And very very expensive.
Jeff - You know about this process first-hand don't you? I agree totally with your experience with hospice workers. I have worked with some of the nurses, and they are very very special.
Ruth - Exactly! The care-providers would be highly compensated, require an education, and the position would be very prestigous. A whole new school of thought.
Here in Oregon we have death with dignity legislation that allows people options about that last stage in life.
I agree with you so completely and this 'prolonging death', hooking people up to machines in hospitals when their bodies are shutting down is a terrible thing. When my husband's grandmother had a very bad stroke, one that would kill her and she would not recover from, her family did just that to her. She died anyway. I was so angry with them for not letting her go peacefully.
I do not fear death nor what comes after. Doesn't mean I want to stop living, but we will all die. Dying is not painful, it is the struggle to live that causes the pain. When it is my time I want to slip away at home, unencumbered by machines, tubes and pipes. Let me go the way I came.
lakeviewer - Oregon is very forward-thinking in many areas. I hope to make it back there soon.
Ellen _ I agree.
I guess I'm the oddball... I would rather die in a hospital or hospice. I want professionals to do all the stuff they do, so my family can just go somewhere quiet and grieve. I want the pros to take out all the good stuff and pass it around where needed. If I died at home in my sleep, my organs would die with me. I'd rather my family not have a place in their home where, when they look at it, they remember that's where I took my last breath.
This is spell binding Nancy. Beautiful.
i like the thought of death being a celebration of the life that was lived.
Mzz - I think this is along those lines - an alternative to dying at home or a hospital. Someplace geared toward the needs of the dying.
Verily - Something to think about, for sure.
Brian - We really need to get there.
my great gandmother died in my house and I had nightmares for weeks (I was 6 yrs old) I dont know, I dont think I want to die in my kids houses, I dont want them scared or weirded out.
I think there should simply be a choice where you want to be when you go.
People need to remember that often in a tragic kind of death, where it looks like the person is suffering, their spirit has left the body already. Dying is easy, and nothing to fear. We go back to where we came from.
Nancy - I agree. I think the fear of death colors so much of how we view the process.
Ah...a subject close to home as we care for both of our mothers at the ages of 87 & 90. I totally agree with what you are saying but the whole medical process is askew hen it comes to old age. These ladies continually visit the doctors for the latest and greatest medicine that will extend their life just a few months more but in actuality, the QUALITY of life is not present which is essentially what you are saying. Back in the day, before there was the "latest and greatest" medicine to do this or that, people died naturally without all the prodding and poking that takes place today in order to line the pockets of others. Of course..just my humble opinion.
Makes me sad! My Grandmother went through hell and lost her independance when the doctors insisted on putting her through dialisis... prolonged her life a few months but they were hell!
Here in Spain at a certain point the doctors no longer recommend certain invasive procedures, it's almost a given that most people would prefer a better quality of life for a shorter period than a drawn-out extra months of suffering.
What I think is very important is to let family members know what you want, so as to not leave terrible decisions to them when the time comes, and they're already distraught enough without having the extra responsibility of choice and decisions hoisted upon them. I guess the term would be a living will?
I was a hospice volunteer in Boulder for two years. It was rewarding but some of the most difficult experiences I ever had. I needed to be there 100% (when I was there) and I could not help but bond with my patients and family members. I actually could not continue because I was grieving along with them.
That said, it was worth every second, and I would not take back a single encounter. I just could not continue at such intensity for longer.
Nancy,
Your blog is a joy. You have so much on your mind and it is always worthwhile.
I have been thinking much about the same sorts of things and especially about how to fix our healthcare system.
Great post Nancy, death is way too taboo in our society. I talk about it openly and don't fear it. It's just the next step.
beautiful post. A Living Will can aide you in your final wishes - ie: extreme measures, etc.
My grandmother, at the age of 93, chose to not receive any meds when she contracted pneumonia, she died with her children and her grand daughters at her side, we sang her favorite songs, she wore her favorite pink sweater. We told her stories until she passed.
She died as she lived, well. It is how I am planning to do it (eventually).
I agree, Nancy, that it is a very individual thing and that a Living Will is a good option, for ensuring that one's wishes will be respected. Thanks for raising the awareness about this important subject.
I read that story as well in the NYT, I gave those nuns a big RIGHT ON. Been the manager of my mother's final months, don't like what I call the death industry. Makes no sense to me, other than lining certain peoples pockets. Getting to accept death as an IS without all the negative judgement would be a good start.
No one near death should be prodded and such. Dying should be a peaceful thing-especially if you're dying of old age. I definitely would want to draw my last breath on my comfy bed, in my comfy house!
The fears most of us have about the dying process is those of hospitalization, indignities and pain. It would be comforting to know we could ease the pain without inflicting further discomforts in the process. I like your thinking.
On vacation and haven't gotten to read many blogs but wanted to let you know we made the bruschetta recipe you had on your blog while here at the beach and it was such a hit we had to make it again! Excellent!
I definitely think it's the person's choice as to what they want to do with the end of their life. We've had a lot of deaths in our family; some went quick, some struggled with cancer for a year or two. My Dad had a DNR on him. He was home with hospice. One day he struggled with breathing and my sister called an ambulance. The doctor was upset with her for doing that, but all of us understood because how could you just stand by and watch you father die? I happened to be with him when he eventually died, and he went peacefully.
This stirred something in me since my father is in that senile stage already and all we're waiting for is the inevitable. I don't know how to explain it best but what happens is that no matter how expensive his medication gets, we still try to provide him the best medical care - maybe because it's what's expected of us as his family, or maybe because providing him expensive medical care may prove to the world that we're taking care of him, or maybe we resort to pricey medications as our way of easing up the anxiety we feel because we don't understand death at all. This is a good post and thanks for sharing a different perspective.
Well said--these are tough questions with better solutions than we are currently employing.
When I was 17 I went to live with my grandparents. I didn't know them very well, so the process was both painful and beautiful. My grandfather became my best friend and the father I never had. 6 months after I lived with them, my grandfather was diagnosed with Leukemia and began undergoing chemotherapy. It changed him. His joints swelled, he was vomiting every hour, his hair fell out, and he slept all day. He didn't want it anymore but my grandmother insisted.
He died soon after starting the chemotherapy. He died so drugged up he didn't know my name, he just wanted to hold my hand and stroke my hair. My grandmother died 3 months later. I think it was a suicide, but no one really listened to me anyway.
I believe you are right about educating people on death. It's a beautiful idea. I'll put all of my energy into hoping it comes true. I'm sure my grandfather would have wanted to die in a more peaceful manner.
Alica - I think doctors are so worried about lawsuits that they feel an obligation to medicalize the process. We just don't have the tools in place to say it's time to find a comfortable place to live out your time pain free (hopefully).
Crazy - I had the same experience with my Dad, but he was much younger (58), but I still wished there had been a "center" where he could have been well-cared for in his last weeks that didn't include needles and hospitals. Spain sound like it is at least going in the right direction.
DJan - As a hospice worker you might have some thoughts on whether or not a "center" would be a good idea. What do you think?
Butternut - Thanks! I think we all need to be thinking how to make our healthcare system work, because it's not working now because it's not sustainable. What are your thoughts?
Rain- I agree, it has to be a cradle to grave education. And we need to start with the death taboo. Reading about Near Death Experiences has taken the fear of dying, but for me, the horrific hospital procedures are what I fear.
Good Cook - Perfect. Me too.
Marguerite - A Living Will is certainly something we should do right now.
Cubil - I totally agree. I think the "death industry" is also a "fear of being sued" industry.
asweetcakes - I would like to die at home as well, but if that isn't something my family would be comfortable with, then an option other than a hospital would be my preference.
Hilary - Exactly!
Missy - Yay! Thanks for telling me that! I love that recipe! It comes from Stacy's Snacks, and she has lots of great ideas and recipes.
Pat - It is so hard, all of it.
Spiritual - I know what you mean. We all do it because there are no other mechanisms in place not to. We love our family and we do what the doctors tell us to do. What I'm proposing is a new way of looking at death and the process. It still requires research and then education, with alternatives in place before we get to the point of needed it.
Slamdunk - I think it is worth researching, at least.
Phoebe - Your grandfather sounds like a wonderful man. Your grandmother very well could have committed suicide, as most spouses of elderly people who die, also die within a year, the reasons not always unknown. Overdosing on medication a possibility. Your grandfather is a perfect example of what I am talking about here. What if they had been looking forward to going to a wonderful center with luxury and lots of very qualified people helping them on to the next part of their journey?
Thoughtful post. Oh, to get everyone on the same page. Certainly worth pursuing, however.
Thoughtful post. Oh, to get everyone on the same page. Certainly worth pursuing, however.
My sister was only 62 when she was diagnosed as terminal. When asked whether she wanted treatment to give her a few extra months, she, with all grace, said, "i have no unfinished business." She said she had lived life precisely as she'd wanted--career, art, friends, travel, and her "Baby" sister. It was my pain and privilege to care for her those last horrible, beautiful nine months. We created beauty in her simple hospice room at a "nondescript" LOW-end (HA!) center. I brought in her art work, her sheets, small items she loved. They let me put up a shelf for display. I brought in a little fridge. The wise doctor left orders for every COMFORT cocktail imaginable, so the staff could draw on whatever meds possible to offer some comfort. You are right. We do not think it through. She felt the light grew bright at the end--we are at one part of an endless continuum in this life. Thank you for your thoughts on more than this one topic.
Both of my parents spent their final years in institutions. My father had Parkinson's and moved in with us for 3 years after we had to put her in an Alzheimer's facility. Once his Parkinson's got worse, we moved him into a facility where my sister was the wellness director. Not a great situation, but better than other alternatives.
There should be an alternative where people can stay in their own homes and obtain the care they need. These facilities are not only outrageously expensive, but they are sad places. You're surrounded by other elderly, infirm individuals, all the mind sets are the same. They all know, at some level, that they probably won't be going home again. It's not a place where you get well.
Nancy, you asked if I thought a "center" is a good idea, and frankly, there cannot be a "one size fits all" center that would work. As several people here have said, they want to die at home in a comfortable place surrounded by the familiar.
As one approaches death, the need for any "thing" becomes meaningless. I remember one patient who was unable to eat any more and was so happy to be given a breath mint to roll around on her tongue. It was enough.
Midlife - I think we at least need to look at some alternatives. The same page would be the ultimate.
Jeannette - What a beautiful sentiment - "my pain and pleasure" . It sounds like you attempted to do what I am talking about here. Wouldn't it have been wonderful if you and your sister would have had some place already prepared for you to personalize, but with all kinds of other amenities? It sounds like she had a "life well lived".
Trish & Rob - I think maybe if we thought more about what might be beautiful, instead of just adequate and functional, it could be different.
DJan - Good point. Thanks for your input. My father was much the same way, a little bit of water was all he wanted. But he died in a hospital with needles and an uncomfortable bed, and strangers all around him. I just wasn't able to care for him at home at that point in my life. I had just had a baby and a 6 year-old. I wish it would have been different. Now I could do it, but at that point I just couldn't find him dead. I visited him every day in the hospital and spent as much time as I could but I would have loved to have had a better alternative for him.
Nancy, thank you for this thought provoking post.
I agree with you that we need to be educated in the dying process. We have birthing rooms in hospitals with mid-wives to help expectant mothers give birth. The entire family participates in the process of this transition.
I think we also need "transition rooms" for the dying and their loved ones that are decorated like home. It would be best if the person could die at home in a familiar environment surrounded with loved ones like Jacqueline Kennedy Onasis during her death.
Life here is only temporary. We live, grow older, and we die. This is natural and what happens to all of creation.
My mom was care for at home during her last years. Right before she died, she came down with pneumonia. It is natural to want our loved ones to live and to continue living. When mom came down with pneumonia, my brother's instinct was to call the doctor and 911. Mom passed away a few days later in the hospital-alone...
My brother and sister-in-law later told me that mom looked very pretty and peaceful during their visit with her after she passed away.(Mom in LA and I was in Pa.)
During one of my last visits with mom, she told me she was ready. She was not afraid.
She had received Jesus into her heart many years ago and had a glimpse of what heaven would be like while living her life here on earth. She had no fears. The most wonderful thing is we will be reunited with each other some day in heaven where there will be no more death, no more tears, and no more suffering. I'm looking forward to the family reunion!
You are soooo correct. I'm watching my 93 year old grandmother going through this right now in the nursing home. She is so miserable and tells us every day that she just wants to die. She just wants someone to sit next to her all day if we could while she lays in bed unable to evern turn herself over. She is 75 pounds and can't see and can barely speak and pretty much has no use of her extremities. It is so sad and emotional to watch her this way. It's to the point that as her loving family we now want her to die so she can be at peace. You're right, there are no good answers or alternatives right now.
Mee-Li - The same thing happened to my grandmother. A massive stroke. My aunt made the decision to have all the drastic measures. I think I would have just let her go, which was the outcome anyway. I guess we live and learn.
Nina - I'm so sorry for your grandmother. Love and peace to her soon.
Where I work, most of our patients are No Codes, which does not mean no care. My patients die peacefully, without IV's, without feeding tubes, without oxygen. When a patient has a stroke and can no long each or drink, they die. It's not painful and it's a part of life.
For health care to continue to be accessible, I live in Canada, we have to understand and accept that we will all die, not matter what doctors do. Modern medicine can only postpone death, it cannot stop it. Do we really want to bankrupt our children in an effort to avoid death for a month or two?
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