Don 39;t Starve Together Black Health
Janoc Florez
Suzanne had collapsed at home after having prepared her breakfast but finding herself unable to eat. By the time the ambulance got her to Emergency, she was largely immobile and had great difficulty speaking. She was obviously quite thirsty and when I asked one of the Emergency physicians to start hydrating her intravenously, he quickly arranged for that to happen.
Let me be clear. The moment that Suzanne told me she had found a lump in her breast; the moment it was diagnosed as cancer; the moment sixteen months later we learned that it had metastasized; all of these moments are indelibly etched in me with grief and shock.
Why was I so surprised? I later learned that this situation is not unusual for cancer patients in the final days. But we had never been allowed to meet with a palliative care physician until that hurried consultation in Emergency the previous day.
Suzanne had done everything she could to prepare for her death. She had made a new will, shown me how to cook the spaghetti sauce our son Alex consumes by the litre, picked her cemetery plot and chosen the engraving for her own tombstone. But she had not been allowed by the health system to meet with a palliative care physician who could prepare us for her final days.
Officially in Ontario, palliative care can begin at any point in the progress of the disease. However, according to the Canadian Cancer Society, about 40 percent of cancer patients in the province do not receive any palliative assessment in the last year of their lives.
Suzanne had talked a lot about her final wishes, mostly revolving around her desire to die at home. I subsequently learned that while this is the most common desire of terminal patients, in actual fact two-thirds die in hospital. We were quite simply preparing for the wrong thing. The contingencies we imagined were the wrong ones.
Suzanne had a great deal of difficulty clearing the secretions from her throat in her last days. She was constantly choking. This is apparently quite common. But I had not known that. I had to choose (or help her choose) between consciousness and comfort in the selection of medications. That too is common. I was not ready for that either.
Suzanne benefited from tremendous medical care during her illness. It was technically sophisticated and compassionately delivered. She and I were truly convinced she was given the best medical chance to live as long as she could with the best quality of life.
I understand also that it is a matter of resources, and that a very large share of our medical costs are already devoted to people in their last six months of life. But there is evidence too that good palliative care saves the system money through fewer Emergency visits and hospital admissions.
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I cant describe the way I feel about my best friend Bill. This happend so quick. Its a nightmare. Roomate screamimg at us.Screamimg your dying. Got a call a few days ok no more visits.call came from brother.Said Bill would be paaaing in the next few days and no more visiting him.Brother was never around for him and had stole all siblings inheritence from father and told them all he investeted in a house that burned down. When he told me cannot see him again I said thats not what Bill would want he said yes i know bit thats the way were having it. Hes been so sededated he never got the choice of consiciousness or meds. The care he was under with whom was just so so sad. He got wrapped like a mummy in a sheet and kept so sedated with morphine etc. Even when he wasnt in pain.These peops were not wanting him to have a moment of consciousness. The roomate Aimie had to be in faces being his voice, even when he still had one. I just dont get it. ? I cant carry this anger so i give it to god. Thanks for letting me share.
Thank you for your post. I am 70 years old have a muscle disorder and live in Iowa. Unless I can get to Mayo Clinic I will die slowly or from ignorance on my case quickly. Having a rare disease is difficult for care without Covid. But now doctors are taking a stand for me to bother the pulmonologists anymore. They are too busy. This happening just when there has been a significant and documented change in my oxygen levels. I think we may try palliative care again. My new GP brought it up. Kathleen
This is such a rough journey and it does my heart some good to see other people being able to go on after losing their spouse because I cannot imagine that now, and I am beginning to feel emotionally burnt out. Where we live I feel so isolated because the rest of my family lives a six hour drive away. Thankfully, they are adult and more able to accept the situation than may have been the case for your children.
I am very sorry for your loss,my mom just died 5 days after getting her corona shot,the first one,my mom was 88 years old but she was fine before getting it,she went to the hospital she was there 14 days on oxygen,and then in hospice care at home that my brother ordered,for her morphine was ordered by the doctor for her comfort,she was never in pain,but they keep giving it to her,and she was chocking all the time to.she died march10,2021.
I am experiencing this same shock as my mother is in the end stages of bladder cancer. We were referred to hospice, only to learn that she cannot get palliative hospice care (ie pain meds) while receiving palliative radiation. It is ridiculous that two treatments having the same goal- pain relief- cannot be conducted at the same time. And like you, families and patients are not made aware of this hugely important fact until it is too late to address with any forethought. This needs to change.
Thank you so much for sharing your very emotional and traumatizing experience. Your post came up when I googled Mom do you still love me. Even though I failed to call the police when your death was emminent due to starvation and dehydration in the hospice.
I had no idea that my sister-in-law would be denied food and drink in palliative care. It was a horrible end. I kept my mom at home and comfortable at the end of her life because of the pain we experienced with palliative care. Thank you for sharing
I have great loss also from cancer my identical twin sister my husband and my father we the people are kept in the dark . cancer is a money making situation for many people and there slould be a cure like yesterday. My heart is broken from my loss and for your your great loss.l pray for confort and the ability and courage to carry on with the great physician God. Connie
My dear husband died of hypovolemic shock in CCU in Halifax ,after after being aggressively diuresed
and not enough hydration for 7 days in middle of July.2017 .He begged for water until the day he died.
he had been on proprofol ( causes further dehydration risks}, and suffered from diarrhea.I informed healthcare staff that he was severely dehydrated and assured me was getting enough fluids
Last entry into his medical record documented he was hypovolemic ,and then went into a tachycardia
and passed.
TOO LATE FOR FLUID RESUSCITATION.
I was devasted and another example of a Resident not listening to patient or Family. Not evaluating their patients closely and appears following some algorithm or copy and pasted the same treatment he
received 4 years previously when he was less compromised,
Communication to the Family was unacceptable.
My wife was healthy until she started chemotherapy. Then she had the operation a lumpectomy on January 9 2020 and died June 14 2020 a few days over six months she had never been sick a day in her life until the chemotherapy.
hi my condolences for the loss of your wife, and to the mother of your children this is heartbreaking to hear, i have a friend whos mom has been diagnosed with terminal cancer and 6 to 12 month to live they are unsre on chemotherapy or radiotherapy as her immune system is weak and she is underweight, she has been put on drinks that are to help her put weight on. her diagnosis was a tumour found in her oshopogasis an now the cancer has spead to other parts of her body this was found out by a p.e.t scan if u could give any advice on how i can support my friend through this i would really appreciate your advice many thanks my thoughts are aith you and your family
I know this all to well. The lack of communication and coordination between the facets of the medical system is horrendously failing patients and waiting money, resources and time. I just spent 3 days and 7 hours of driving back and forth to different hospitals trying to get abdominal fluid drained for my mother in law. Stage 4 hospice survivor. She was already once told she had weeks to live and spent 3 months living in hospice, then another 3 months in extended care and now shes in an apartment. We know all to well what we are facing, we had this horrible trial run already over 2 years ago.
I wish doctors would allow us to decide how we wish to die but that is apparently asking for too much. I lost a dozen friends to breast cancer and they all said they wished the doctors had listened to them. Many had complained of symptoms years before the tumour was found but mammograms all turned up negative and no other detection methods were prescribed, even when my friends begged for them and were willing to pay out of pocket for them.
Paul, I came across this article via Twitter (the power of social media).
My deepest condolences to you on the passing of your wife Suzanne. I am saddened to hear this account of what happened to her, and the frustration you both must have felt navigating a system that is not always responsive to patients needs because of artificial and arbitrary barriers.
Our experience with palliative care and end of life care was so very different, and I wonder if coming from the pediatric world there are many lessons to be learned for our healthcare system that deals with adults.