Why Didn't They Tell Me?

Always the overachievers my husband and I were so focused on medical solutions that even when he grew weary of the decades’ toll of chronic disease and multiple hospitalizations, I didn’t dare give up our pursuit of cure. It was a seasoned and perceptive home care nurse supervisor who stunned me one day to consider hospice care. And in retrospect, even this was when I asked about palliative care. After we shifted our intention from living at all cost to finishing a life well-lived, even his doctors agreed that hospice was the right choice. Some of them had chosen the same compassionate route for their family members but still hadn’t recommended it to us. It was as if we spoke a keyword that unraveled all denial and we could finally see where professionals already knew we were headed. As our children came from out-of-town in the following two weeks before he died, we made sure they all had a copy of Barbara’s booklet to better understand the experience we were creating on his behalf. We won’t be un-learning the valuable education we gained. Person by person, we will change how we advocate for ourselves and our loved ones in the dying issues we face.

The booklet “Gone from My Sight” was immensely help when my husband spent the past 3 month here at home with Hospice care twice a week.He died here at home surrounded by his loving family on Christmas day 2019.

I have so many friends, fighting for the “best” care for their aging parents who are clearing done with this life. Fancy, expensive Physical Therapy, feeding tubes, invasive testing. No one to pull them aside and say, “Look, your Dad is 92, he is beginning the path of moving on. He is dying.” I had a hospice nurse say that to me as I fretted about my Mom’s intake/difficulty swallowing. It was a huge sea change for our family, as we shifted into the mode of saying goodbye, providing us with precious days of closure

From my father to my younger brother to my mother, I learned a little something every time. In retrospect, however, I have come to realize that the nurses were giving me a lot of good information that I just wasn’t processing. Once at the doctors office, after my brother had gone down the hall to the bathroom, I asked the doctor whether it would be better for my brother to stay with me (I could take him out in the sunshine, etc.) than to be in his daughter’s living room where his granddaughter did her homework. The doctor looked at me as if I were the patient, and said simply, “He’s dying…” I mean, obviously I knew that, but the full enormity of the situation just wasn’t registering in my head.

My 92- year old mother had home hospice, which, as it happens, is what she always said she wanted. The last surviving members of her generation, her sister and her sister-in-law (my father’s sister, her friend from high school) plus their oldest daughters, my surviving brother and my sister, were all around her bedside saying the rosary (another request) as she passed. We had had the priest in earlier. The duty nurse had asked me that morning when the priest was coming — “I think she’s waiting for him.” At last I was starting to get the hints. I called everybody in reach and told them to get there as soon as they could.

And they did, and it was all beautiful, and she looked beautiful and calm in death. My only regret is that I didn’t ask my sister to take a picture.

I have worked in Oncology as a nurse since 2008 and a nurse practitioner since 2013. Sadly, this is the scenario that frequently plays out as some providers have real difficulty discussing end of life. Providers receive very little training regarding how to have these types of conversations. Training on placement of chest tubes, intubation, CPR etc. but not much in the way of how to have these important, meaningful conversations with patients and their families. We deal with end of life every day in oncology and I try my best to make sure patients and families understand what is happening every step of the way. I always tell them they are the Captain of their ship and we are there to assist and also educate. Part of that education involves helping families understand when things cannot be fixed and the true difference between “quantity” and “quality” of life. It is hard for families to know what questions to ask but I would encourage them to ask their providers this “Is this treatment going to prolong life and if so, what kind of quality are we talking about?” Additionally, don’t be afraid to ask for timelines. Most providers don’t like to give anything specific for fear of crushing hope. But you can still ask for a general idea of how much time they believe is remaining for your loved one. I think a lot of providers are actually waiting for “permission” to discuss end of life – they are worried families will be angry but for the most part, the families I have worked with have been hugely appreciative of my honesty.

Hi GK, I just read the article in the Atlantic that you suggested. What a great, thought provoking article. I loved it. Should be required reading for all of us. Not that I am advising no treatment after 75, (and remember this Doctor is 56 years old so 75 looks a lot older than it will when he reaches 75) but he makes excellent points about the quality of life and how do we want to live, or not live, out our remaining years. Thank you for recommending it. Blessings! Barbara

Wonderful Imformation

Everyone at the Nursing Home where my husband had to be transferred to from leaving the hospital, knew he was dying except me. When Hospice was called in, it would have been an excellent time to explain his condition and that he was in the dying process. They told me nothing. In retrospect, I learned more from your booklets than any of those connected with his care. Thank you.

I hear about the same issues every week. I volunteer each week patients in a hospital cancer unit; each week I Volunteer at a stand-alone Palliative and hospice care facility. Both has Chaplain Volunteer.

BK, I’m wondering if you’ve read this article:

https://www.theatlantic.com/magazine/archive/2014/10/why-i-hope-to-die-at-75/379329/

I have been fortunate to participate in classes and support groups at my local chapter of the Alzheimer’s Association. This education has been of great help in understanding the changes my mom is experiencing. My mom, now age 91, is in the “long goodbye” phase, having very limited periods of engagement with the world. Although she has her eyes closed, I believe she can hear and recognize my voice but I also know she would not have wanted to “live” like this, mostly in bed or a recliner. We have also been fortunate to find a caring and compassionate care home, six beds, in my neighborhood. But I empathize with anyone who is losing a loved one this way. There is so little we can do to help her. But at least, I have known for over two years that the disease is terminal, that each decline is irreversible, so that we are able to prepare ourselves for the end, wishing only that it would come sooner.

I, too, cared for my father in the last couple of years of his life. A few hours before he died, I said to him, " See you tomorrow, Dad," and the nurses at the Vets hospital where he was at gave each other a strange glance -later I realized it was a “knowing” glance. He died about three hours later, after I had driven home (about 30 miles away). I would have stayed if I’d had the slightest clue that death was so eminent.

I can echo the sentiments in the letter above! My husband died on May 4, 2019 from lymphoma. He was under the care of “world class” oncologists at the Medical School in Dallas, TX. He was in and out of the teaching hospital from January 2019 until he died in hospice. I did not get your excellent book, Gone From Sight, until the night before he passed. All the signs of impending death were there. Not once did anyone in the medical profession counsel us on the signs of death. In fact he was subjected to so many tests and procedures. The day he was released from the teaching hospital (one week prior to his death), we were hounded to make an allergy appointment in August! We requested hospice on Monday…the doctor’s reply was “yes we don’t think he’ll get well.” He died on Saturday. It is a tragedy that we did not have quality time to say our goodbyes.
I’ve purchased copies of “Gone from My Sight” to hopefully help friends and family when the time comes.

Exactly, I only wish the book “Gone from my sight” was given in the hospital and not the hospice. It would have saved much heartache the 3 weeks my husband was in the hospital before transferring him to hospice. with them doing all types of treatments test and advising more surgery and a feeding tube which I said to stop, enough was enough. A nurse who was a hospice nurse that happen to be filling in on his floor in the hospital one night, said my husband qualified for hospice. But no one else said anything but the physician got irate when I put a stop to all the other surgeries they had scheduled. My husband had lost 30 lbs in 3 weeks, no communication, no eating, but continual sleeping. The physician asked why I stopped, I said look at my husband… his body had had enough. He was transferred to hospice 3 days later and died on the 4 day.

The hospital needs training on when to tell the family that the patient is nearing the end and not to keep trying to keep the patient alive and give false hope to the family. I felt it was all about money, how much can they make off this patient?

Thank you Barbara for all you info, books and caring to educate the masses.

It’s understandable that heath professionals can’t always convey their true assessment of a loved one’s true condition. In an effort to give me the tactful combination of facts, opinion, and compassion, the words may have been muted by my own hope and desperation. I’m glad they didn’t hand me a check list supporting their conclusions, but maybe that’s what I needed.

I love all your booklets and have learned so much from them. I agree with what you said about doctors being about “fixing” people. I wanted to know everything about my late husband’s final months and I was so happy to have heard about you so I could educate myself. We will all die and our medical people have to be willing to let the family know when it is close time for a loved one to die. Thank you for all you do.
I hand out your booklets to people I know and they are grateful for this information.

Look forward to reading this book.

My condolences to this family also, however in my experience, it is often true that the family does not have ears to hear. It’s akin to planting, watering and growing, it’s a process. I’ve had many difficult conversations with families, and the first time they don’t hear what I’ve said, the second time they don’t agree with what I’ve said, but the third time they may hear the hard realities. As Barbara says, knowledge reduces fear, may the education be gentle and ongoing!