Physicians and family caregivers must find the courage and compassion to talk about dying before it’s too late.
I was with my mother and father when the oncologist told Mom the recommended course of treatment for lung cancer that had metastasized to her brain was “palliative, not curative.” Because we are a medical family (my father is a radiologist), we understood what the word “palliative” meant in this context, and there was no misunderstanding the meaning of “not curative.”
The cancer was terminal; it was going to kill my mother. Any treatments would relieve symptoms, but would not cure the disease.
Before we left the oncologist’s office, appointments for initial radiation therapy and chemotherapy sessions were made, and the overall course of treatments had been explained. But, in these anxiety-inducing and grief-filled moments when our family’s journey through incurable, terminal disease was beginning, not a word was said about the full spectrum and promise of palliative care or about the gift hospice would represent when the journey was coming to an end.
With the clarity of hindsight, I know now that this was a big missed opportunity.
My mother should have been referred for a palliative care consultation immediately after her diagnosis. Palliative care – to address not only her physical symptoms but also her emotional needs and goals, as well as those of her family – could have begun on day one. It would have made a tremendous difference. Throughout her illness, my mother suffered far more from emotional distress over the impact of her illness and death on the family she didn’t want to leave than she suffered from physical pain.
We also should have been informed right away about hospice care as a compassionate end-of-life option so that we could plan and prepare rather than wonder or worry. We might have embraced it sooner than we did, had we known it would so wonderfully mesh with and support not only my mother’s end-of-life wishes but also the quality-of-life goals that were of paramount importance to her.
Those who are seriously or terminally ill suffer existential pain that cannot be treated by chemo or radiation therapy, and their families suffer with them. Those who have experienced it know there is more to palliative care than treatment to relieve symptoms of disease. Families who are unaware of the holistic and compassionate goals of palliative care and hospice may not be allowed to reap their benefits. This saddens and upsets me.
The time to talk about end-of-life options and preferences is not when life is ending.
Yet far too often the conversation begins only then. Many patients and their families simply do not want to play the hand they’ve been dealt. Denying the reality of their diagnoses, terminally ill patients believe or are encouraged believe that if they “keep fighting” or try just one more medical intervention, they can beat the disease. For family caregivers, keeping someone alive, or wishing a terminally ill loved one would continue the chemotherapy that is making her feel too drained to enjoy the time that remains, is often a very selfish decision. We desperately don’t want to lose our loved ones.
I believe a bigger cause of the denial epidemic can be found in the medical community. Increasingly, physicians themselves are publicly acknowledging that too many doctors are still too reluctant to refer patients to hospice care even when they know the patient can’t be cured and faces death within six months. Because too many doctors still think of death or the inability to cure as a personal failure, too many deny dying patients and their families the chance to experience the full benefits and gifts of hospice. Because too few people know what hospice is, and too many believe it is something it isn’t, not enough are asking for it if their physicians don’t suggest it.
Yes, it is difficult to accept mortality and talk about dying, but we must.
The conversation needs to start much sooner. And it needs to be initiated, far more frequently than it is today, by physicians who muster the courage and compassion to be forthcoming and honest, even – or especially – when the news is very bad and the options not much better.
If we are not talking about death, then we are not preparing for it either. And if it hasn’t been talked about, then the default plan likely will be more heroic but ultimately futile steps to extend life at all costs. Too often, the costs far outweigh any benefit, especially if measured in terms of quality of life.
I am a daughter whose terminally ill mother made it clear quality of life, not quantity, was the end game. Her family was able to respect her wishes, with the help of a hospice team that guided us on our heart-wrenching journey and made the unbearable bearable – for Mom and for loved ones. I am a daughter who felt enormous gratitude, and not a shred of guilt, when her mother took her last breath. We had given her a good death.
by Linda Campanella
Linda Campanella is the author of a Nautilus Award-winning memoir about love and loss, family and faith, hope and hospice, grief and gratitude: When All That’s Left of Me is Love: A Daughter’s Story of Letting Go.
We are failing ar Getting folks to have the talk about end of life and what they want or dont want done medically. I think its because we simply dont want to face our own mortality. At This is what I want, we have been tryying to get folks here to look at the tools/checklist that can clearly tell everyone wht you want done or not done for medical treatment.
Although everyone here talks about that being important, nobody has gone to the site to look at the forms that can via a checklist, tell everyone precisely what you want for medical care or taken action to use them.
That’s baffling – a large group of folks giving care or trying to give care and nobody explores the site we have often posted http://thisiswhatiwant.info to get some advice and the tools for having the talk.
Why not is the question? Please comment so we can learn how best to reach the folks here and their loved ones on a very critical subject – Clearly defining what is wanted and not wanted as care steps by the person being treated or cared for.
Thanks, Neil Licht, co-founder This Is What I want. this tool for
Great article.. I too believe Hospice should be discussed openly.. My mom passed away at Hospice House as did my Aunt .. My mother in law had Hospice at the nursing home she was in..
They are wonderful caring Angels ..
Now as a caregiver for my husband , we discuss the what ifs openly.
It’s wonderful to know Hospice exists..
And yes , sometimes people do get better and no longer need Hospice care .. I have seen that first hand too..
Thank you for your post
Theresa
The whole idea of planning for the end of life journey is, well, hard for any of us to face.
If we do face it however, we can give our loved ones what they need – a specific roadmap for what we want done and not done for medical care. That takes the guilt, angst and emotional trauma of having to make the decisions about what to do off the shoulders of our loved ones so we and they can face that journey without falling apart.
Please see http://www.thisiswhatiwant.info
My wife was diagnosis with Stage 3, symptomatic, aggressive, multiple myeloma. That’s as bad of a cancer diagnosis as one can get. Her cancer was terminal, metastatic, treatable, but not curable. Prognosis was 3, maybe 4 weeks, followed by we can’t figure out why she is still alive. Annie was only 58 years old. The oncologist left the room, to give us a few minutes to digest what he had just said. As I stared at her emptiness, I wasn’t sure what to say to her, but knew I had to say something. I got on my knees, put my hands on her cheeks, looked her in the eyes, and said, “I promise I will love you, take care of you, protect you, and won’t let anyone hurt you.” At that point she lowered her head down to mine, and we simply held each other and wept. From that day on I became her 24/7 caregiver, and ultimately had to deal with Annie’s death. Annie’s story is different in that she had wishes, and I promised to follow them all the way to the end. And I did that for her with integrity, and courage I didn’t even know I had. She did not want to die in the hospital, or on hospice. She wanted to die on her terms, when she felt she was ready. And she did! In her memoir, “Because of Annie,” Chapter 14~Going Home, one can read the build-up to what I can only speak of as the “Perfect Death.” The last 26 hours of her life was spent on Comfort Care, and throughout the dying process Annie was a gift that just kept on giving. In her dying hours through her ability to communicate with the family while unconscious, my questions about the dying process were all answered. Annie died with peace and love in her heart. The paramedics, fire department personnel, and the physician that responded to our home after her death, all said the same thing. Her face was beautiful, no signs of stress or worry. When talking about dying this is a must read chapter, as it breaks down the event into an educational awareness process for caregivers to potentially follow based on the patients wishes, or the availability of hospice. Make no mistake, hospice and end of life care is changing. It may become necessary for some families in the not too distant future to administer comfort care for their loved one. I don’t have a problem with hospice, but, I was told because I was a competent caregiver, and I was, the hospice nurse would only come over twice a week for a get well check. That scared me! Annie was suffering from internal bleeding, that due to low platelets, could not be stopped. Annie was living minute by minute, and no one knew when the event was going to take place, i.e., she would have a bleed out. Understanding that, I dismissed hospice as the odds of them being there when she started bleeding over a one week period was 2 percent. All I would be able to do is love her and hold her through the event. Please understand, what I just said was graphic, but as a caregiver one needs to know what to expect under certain circumstances. This event is discussed in detail in this chapter, to include many of our conversations with Annie. Annie’s 30 month journey was always about dying. Because of Annie is a caregiver’s treasure trove of information, and in many cases is like a road map through certain critical events.
Thank you for this beautifully written article. I, too, do my utmost to spread the word about hospice. I have spoken on several occasions in front of groups of hospital staff, and have been very surprised by the reluctance of those in the medical profession to suggest hospice. Sadly, people equate hospice with death, and loss of hope, when in fact it is about quality of life and peace of mind, not just for the patient, but for the patient’s family. People also don’t realize that there are many who actually get better on hospice, yes better, and no longer need hospice services. But for the times that isn’t the case, hospice also offers grief counseling to those left behind. I strongly suggest people check into what hospice service is really about before they or their loved ones need it. You can also read about my husband and my experience with hospice in my 8/5/2013 post “A Note About Hospice” at https://www.facebook.com/DawnAfterDarkness.
Beautifully written and SO spot on. Thank you Linda Campanella.
From The bottom of my heart, I thank you for your insight. My mom asked me to be “her person”, the one who would follow to the letter her wishes. Yesterday I had to keep The Promise I made to mom ten years ago. In all honesty,it was much easier to say yes to her when she was healthy. Seeing it through feels like a test of my soul. But a promise is a promise and next week, dialysis will end and I am taking mom back to her home. I am grateful she had such good foresight. I don’t know that I could have made the choice on my own.