End of Life: Ask the experts, share your stories
The Globe spent more than two months in the nation's largest critical care unit, tracking the experiences of patients, families and physicians making agonizing decisions around life and death. For our in-depth series, click here
Join the conversation: Share your stories about critical care and end of life by leaving a comment below.
Or ask a question for our critical care physicians, Drs. Rob Fowler and Damon Scales. We'll find answers to your end-of-life questions and publish them here on Wednesday.
My father passed away a short time ago. He was 95 and healthy and happy until he was 94, when he became ill. The last year of his life was one he could easlily have done without. Except for a few short periods where he seemed to be recovering, his last year was an unstoppable slide to the end.
My mom died last Sunday morning from neuro-endocrine cancer. Helpless was all my family could feel that we could not stop this disease and prolong her life. We did a DNR since prolonging her life meant prolonging her suffering. She went fast and she went peacefully surrounded by a loving family. There was nothing we could do.
My mother died of Colon cancer at age 63, and her last year was miserable - they even revived her after her heart stopped because she had no DNR order on file. Her doctors were not completely honest with my parents, and did not tell them that - one way or another - she was dying. Just kept suggesting treatments and surgeries, and she never really got any better. Guess they felt that to stop treatment would have destroyed hope. So she went on suffering for nothing. And I personally was left guessing because the doctors wouldn't talk to me either - due to confidentiality. First thing I did after she died was get to my lawyer and have my wishes written down, and I communicated those to my son. But I know it's not enough - nobody will help me die when I need to be helped. That's what's missing in this picture.
My mother passed on at the age of 90 a few years ago. She took 6 weeks to make her transition, which prepared her 3 children well. It was obvious to us that she was going and that she wanted to go. She would say to me in frustration "Marguerite, this transitioning thing is taking too long". And I would say "Don't worry Mummy; it will soon happen". 2 weeks before she passed, she told me what she wanted for her memorial service. I wrote it down. It was a moment of acceptance for me. And when she passed, we cried, but never felt that we had "lost" our mother. The service of thanksgiving for her life was so joyous (laughter, bright colours) that people kept saying "This feels like a wedding". I am grateful to my mom for showing us that death is not to be feared.
I'm 80 years old and in good health. If my quality of life deteriorates to the point I feel I can no longer make a contribution to society why should the State insist on keeping me alive? It would be my informed choice to ask a physician to assist in terminating my life in a gentle comfortable way with family and friends around celebrating. I could say my goodbyes and reflect on what I think has been a life well-lived.
My wife of 35 years was diagnosed with Alzheimer Disease on March 26, 2001 at which time our Gerontologist told us to expect a seven year prognosis. I was able to be Caregiver for five years until she lost all mobility and became bedridden. I won't forgoet that day, my birthday December 12, 2007, when after 24 hours of lying in bed she developed a bedsore and began to be very agitated. I had applied for one of three Nursing Home beds the year before but no vacancy had come to our attention.
I called my Gerontologist who suggested an option of last resort, the Emergency Ward of our local Hospital. She warned me that they would be reluctant to take a chronic care patient given the shortage of beds for acute care patients. When the ambulance arrived that night and placed her on the stretcher I broke down and cried for the first time in my adult life because I knew she would never return. Upon review of her health signs she was given a reading of 15 for blood sugar and was told she had a urinary infection. She was delirious and unable to stand. She was transferred to an acute care ward and the Social Worker told me they couldn't keep her long. We had to put pressure on the Community Health office to speed up the Nursing Home transfer. As it turned out she was kept in the Hospital for 6 months pending release to a Nursing Home.
The Hospital demanded daily rates for her accommodations which accumulated to $5000 before the end of her stay. I refused payment on the basis that she was admitted as an acute care patient and deserved equal treatment with taxpayers' funding. After writing letters to the CEO of the Hospital, I finally obtained a cancellation of the onerous invoices but no apology for the intrusive behaviour or the cold welcome. She passed away in the arms of her large family on January 24, 2009 just over the seven years forecast at the diagnosis.
The Nursing Home staff were so in love with her that they gave extra support to my daily visits and attended her funeral en mass. In recalling the four stages of grief I would say that I endured the first three before she was transferred from the Acute Care Hospital and sustained myself with the final stage throughout her Nursing Home residency.
By the time of her passing and funeral I was in consolation having been grateful for the loving care and signs of life I witnessed daily in the Nursing Home.
If I were to ask the Experts I would say "Have we as a society clarified the role of the Acute Care Hospitals at times of transition for Chronic Care patients in order that families are not placed in such unwelcome settings?
At age 95, my grandmother fell and broke her hip. After hip surgery, an embolism was discovered that could kill her. The doctor called my aunt (grandma's oldest child) to authorized further surgery to remove the embolism. My aunt said that she could not make that decision and that the doctor should instead call my mother (grandma's second child).
My mother asked if grandma had this second surgery, would she walk or even get out of bed again. The doctor said she would not but, without the surgery, grandma might die within a few days. My mother then informed the doctor that permission for the surgery was denied. Grandma died three days later.
My mother then felt a great deal of guilt for allowing her mother to die. I asked my mother what she would want if that was her in the hospital and the doctor asked me for permission to operate. Mother said that I should deny permission. I told her that she then made the right decision. Her guilt then went away.
Last year, my mother died with a "No Code -- Do Not Resucitate" order, one day short of her 100th birthday. She had dementia and mentally died about two years earlier. It was beyond her time to die. Instead of sadness, I felt relief.
I am 74 and in reasonably good health but if faced with a non recoverable sickness or disease I will have no life extending care other than to alieviate pain. A philophisor once said "The person that has had a full life is not the person with the most years, but rather the person with the most experiences" I have had a wonderful life and many experiences, both bad and good, which I have relished.
Thanks to the Vancouver Hospice team, my mum, at 75, was able to die at home in her own bed. I administered all her meds and helped tend to her needs in the final days of her life. The experience was profound, though hugely stressful because I'd never been with a dying person and I didn't know what to expect and how to handle some of the events that occurred. All said and done, it couldn't have been much better and I was happy for Mum that she never had to go to the hospital. I certainly support the hospice movement, and couldn't have managed without all the support and care from the team of nurses, doctors and other staff that allowed us to keep Mum in her own home. I know she appreciated it, too, even though she was unable to talk in the last days.
I firmly believe that the individual should make the final decision on ending or sustaining their own life. However, a doctor will be needed to carry out an end-of-life procedure (just as a veterinarian is needed to end the life of an animal). What percentage of physicians are agreeable with aiding a person to end their life?
The end of life is horrible. I've watched it several times. Excellent palliative care helps but the argument that this will solve all the problems is fatuous. Lousy palliative care is what it is - lousy. We need to allow people to make end of life decisions for themselves and doctors need to assist people to cross over. Most people I see are not so much afraid of being dead but they sure are terrified of getting there.
I am 74 years of age and have had two major surgeries in the last 5 years. I have had an Advance Directive for 15 years. My family were comforrtable as they could be under the circumstances but knew what my wishes were. The converstation with my husband and family was hard at the time of signing the directive. I concider it a gift to my family. My doctor and the hospital I normally go to have a copy. Vancouver General was able to get a copy from My home hospital when I was having an emergency visit and did not have a copy with me. I encourage everyone no matter what your age to have an advanced directive in place. One never knows what the next moment has in store. BC is in the process of encouraginng all its members to have one in place. Do it you will have no regrets, and great peace of mindfor you and your family
May 13, 2009 will always be remembered as the day of a beautiful death.....my beloved, adored Mother, Helen died. Mom turned 89 on April 30th and for the last several years was suffering from the deterioration of her heart valve. Surgery to replace the valve was suggested about a year ago, but she declined. A year later, she decided to see if the surgery was still an option: living with the symptoms wasn't fun. So, about three weeks ago, we went to the surgeon and he said that she was still a candidate, but she had to have an immense desire to live or she wouldn't make it through the recovery. Was she tired and just wanted to die? Or did she really, really want to live some more? Either choice was a good one, he told her, because it was her choice, but she needed to really, really want to live to do surgery.
She decided it was time to die. She had the shock of her brother Bob dying that week and her other baby brother Bill becoming seriously ill. It broke her heart: she was the older sister, she should be going first. And that there was only three of the Gray family left now: Mom, Bill and Hank, was so very difficult for her to bear.
Mom had talking about being ready to die for awhile, but probably because we, her family, were encouraging her to have the surgery; she hadn't made that final decision. My daughter gave me a wakeup call: "Mom, when you talk to Grandma, you have this edge to your voice. You're mad at Grandma aren't you?" Me, in a squeaky, childish voice, "No, no, of course not! Why would I be mad at Grandma?" "You're mad at Grandma because you don't want her to die. But Mom, it's not about you, it's about Grandma. She's the one who needs to live with having surgery, she's the one who will suffer the pain, and it’s her life, her choice. So, get over your feelings and let Grandma make her decision. It's not about you Mom, it's about her! And Mom, I'm not bossing you." Oh my, what wisdom. And so, I cried and kicked and cried some more and then decided in my heart that Mom could make whatever decision she wanted: it was her decision and I would support her 100%. And her decision was that it was time to die.
Now, you've got to have known my Mom to realize what a serious, well thought out decision she was making. She was a brilliant woman, very modern and competent for her time. She'd graduated from nursing school in the '40's and went on to earn 2 post graduate degrees in Gynaecology and Obstetrics from McGill University. A brilliant woman, always at the top of her class! She married and had 6 children, one who died when she was 2 years old. She raised us with such incredible love, nurturing us and her grandchildren till the day she died. My mom was the epitome of family and warmth and adored babies and children. She was passionate about women and had the best legs, till the day she died, I'd ever seen. She also could talk world politics and history like no one I'd ever met.
And she was grateful. There wasn't a week that passed by that she didn't tell me how much she loved me and how grateful she was to have me for her daughter. How grateful she was that we shared a bond. And before she died? We talked about all the things we often avoid when we're living....and say all the things we usually only think about after our loved one dies. We talked about love, loss, regrets, dying, pain, glory and heaven. My Mom was brave, very brave and adjusted too much heartbreak in her lifetime, with grace and dignity and we talked about those times too.
I don't remember my Mom asking me for much during her life: I know I asked her for lots. But the one thing she asked for was that she not die in a hospital. It was amazing how the surgeon gave Mom permission to die: since that meeting she went downhill very fast. Every time I saw her, I was shocked that she was dying so quickly. We had several Dr. appointments, and the Dr's. described what was happening. We all talked quite candidly about the dying process, what it would look and feel like and how it would happen. I spent Mother's Day with her, bathing her, feeding her and just loving on her. We'd decided that she would stay in her lodge for the next several days, and then, after the Dr.'s appointment scheduled in two days, she would come home with me to Red Deer, an hour north of the city she lived in. And so, two days later at the Dr's. when he told her she should be in the hospital, her potassium levels were very high, and several other symptoms indicated she was in sever distress, she was adamant that "her meds not be tweaked, and her symptoms managed" anymore: she was ready to die. And so, I took her to my home, with both of us knowing that death was imminent.
As we rounded the corner onto my street, Mom noticed the low slung red building on the corner and asked what it was. When I told her it was a hospice she said, "Maybe if dying takes too long, I can go there." She asked me to find out about it, she said she didn't want to be a burden on me, but we knew, we both knew, that death was right around the corner.
When we got home, it took half an hour to get her up the five stairs to my main floor. She sat on her bum and scooted up, one stair at a time. And then, at the top, she sat and rested till she had the strength to turn around on her knees and grab the seat of a chair, rest some more, and then pull herself up and grab the walker she'd just started to use. She rested. Two granddaughters came over, Erin and Kim and my son Jesse came home from school. My husband Gary arrived home from work shortly thereafter.
The girls were shocked at supper because Grandma wasn't born in Aberdeen and raised during a depression for nothing and GRANDMA wasted an egg! She wanted a scrambled egg, fresh asparagus and a piece of toasted homemade bread. She ate the toast and asparagus and didn't touch the egg. It took too much effort. Now they knew what we knew....Grandma was quickly dying.
She slept fairly well, up a few times that night and really at peace. It was so good for her, knowing that she was in our home, being looked after and that she was safe, there would be no hospital, no adjusting medications, no interference with what we all one day will face: death. In the morning, she wanted another piece of toast with homemade strawberry jam and fresh orange juice and again, ate the toast but only had a few sips of juice. After a shower and itch cream (her kidneys were failing so the urea was seeping out via her skin. She looked like she was in a cat fight because she was scratching all the time, even in her sleep) she was back into bed. Erin and I were with her for the morning and Kim came at lunch. We all could tell death would be that day and so we started calling the family to come. Mom rested and slept off and on and really laboured to breathe. She wanted me to make her homemade soup and she had a small cup of broth for lunch.
The family started to arrive; everyone was shocked to see how she had deteriorated so quickly, but this was what Mom wanted, to die surrounded by her family.
About supper time, she asked for some soup and Gary was shocked that she ate a full mug, barley, veggies, chicken and all, like a "starving trucker." Family went in and out for the next bit, loving her and saying the things they needed to say. My nephew came out sometime after seven and came to me and said that Grandma's tummy was hurting. Mom had no pain during this process, so I was a bit concerned. I'd arranged for my family Dr. in Red Deer to give her morphine if necessary and I wondered if Gary needed to go pick it up.
I went into the bedroom and asked how she was, what was going on, how she was feeling. She thought she needed to throw up, so I helped her sit up with her bucket. But no throwing up. I asked if she'd like me to hold her and she said yes. Till the minute she died, her mind was clear and she was articulate. And so, I crawled into the bed behind her, with her between my legs and I hugged her and I stroked her face. I prayed for her, asking God to give her peace and comfort and then I told her she could go, did she see what I saw? I saw Jesus with His hands out, beckoning her to come home, to her real home. I told her to go, it was time, her room in heaven was ready, and did she see the angels ready to escort her? Did she hear heaven calling her name? I told her how much I loved her, how much we all loved her and that we would miss her, but it was time to go to her real home. And then, she snuggled into my neck and died. It was a beautiful death; just what she wanted and it pleased me greatly that I could give it to her. She died just after 8:00 p.m. Wednesday, May 13th.
I loved my Mom and will miss her greatly.....but she's home now and is suffering no more.
My grandfather passed away today just after noon. He was quite old, 98, and his time had come. He was in a lot of pain the last week or so and they more or less sedated him yesterday. Since doing that a lot of the signs of his suffering were alleviated and he passed quietly. I hope inside he wasn't suffering. I think the main goal with end of life care should be to alleviate pain and suffering. We are not immortal. We will all die one day, every one of us. I think when it comes to death the role of the medical establishment should be to make it as easy on the dying patient as humanly possible, and to let the person go feeling more or less in control of their fate if they have the mental capability, or to follow their wishes if planned in advance. This is the way it happened with my grandfather today and it helps a lot knowing he lived the life he wanted and it ended more or less the way he wanted it to. I think everyone should think about the hard questions about their own death well in advance of it happening, possibly even it should be a legal requirement that everyone have a living will. It makes a very hard thing a little bit easier for everyone involved, including first and foremost the dying patient.
My father took pride in being fit enough, at 85, to continue living in his own ranch-style house (no stairs to worry about) with just a couple of daily visits from a salaried homemaker/caregiver and regular contact with a visiting nurse. I lived a half-day's travel away, but we chatted on the phone several times a week. The only thing that bothered me was his refusal to let me or anyone else know what his wishes were if he suddenly experienced a medical crisis.
Then one day, the phone rang: he had developed pneumonia, and in spite of being hospitalized, his ability to breathe on his own was rapidly deteriorating. I was asked whether or not I wished to authorize an emergency tracheotomy and a breathing tube. I realized that to say "no" might be to hasten his death, and that there was no time to back off and consider the pros and cons. I said, truthfully, that he was not the kind of man who would want extreme measures taken to prolong his life, but that if death was the result of that decision, he and his family would hope he could pass without prolonged suffering. I was told that the hospital would respect this approach, and that they would call back soon to update me.
The phone did not ring for over 2 hours, which left me far too much time to wonder whether I had been justified in taking the line I did, and whether Dad would really have made the same decision.
Finally I couldn't stand it any longer and phoned for an update. The voice said, "Oh, didn't someone phone you? About 5 minutes after we spoke to you, he began breathing on his own, and all signs now are that he'll pull through nicely."
He was well enough to go home by the end of that week, and lived till shortly after his 90th birthday. One thing that DID change: he very promptly sat down with me, his doctor, and other concerned parties, discussed his wishes should something like this happen again, and made sure all of us had copies. In the event, he died in his sleep at home as he had hoped, and we felt it was the best way his life could possibly have ended. However, I'll never forget those 2 hours when I didn't know whether I'd given instructions that might hasten his death, or whether they matched what he would have wanted if he believed only "heroic measures" could save him.
The end-of-life statement he wrote after being discharged was an enormous relief to his friends and family, and a help to his caregivers, for the final years of his life. Since then, I have drawn up a "representation agreement" with my lawyer, naming the people I wish to make medical decisions on my behalf if I'm unable to act for myself. I can't overstress how important it is to do this BEFORE you think it may be needed.
Real health emergencies don't usually creep up on you: they can arrive out of nowhere. If you're in good mental and physical shape, take advantage of that, follow the Globe & Mail's series this week, and set down your thoughts -- you can always add or adjust something later, but at least get the process going! And if you're NOT in particularly good shape, what on earth is stopping you?