In an era when most die protracted deaths from chronic disease, this means recognizing that death is not just about the right place, but also the right support. And it’s not just about the dying, but also the family who survive them.
Dr. Meyer, my mother died in a hospice unit at St. Agnes Hospital in Fresno, CA and my father died at home of a subdural hematoma after whacking his head at night during fall in the middle of the night. That, in retrospect, was a unique mercy, since the hematoma took before his terminal cancer did (stage 4 squamous cell carcinoma of the lung that had metastasized to his adrenal glands, esophagus, retroperitoneum, mediastinum, liver, and mesenteries). The hospice worker found him the following morning. He could not talk, but could hear my sobbing goodbye over the phone. I will have nothing but praise for hospice for the rest of my life. Thank you for a lovely, heart-field tribute to hospice and your brave, talented, compassionate mother. Remarkable mothers raise remarkable daughters.
Such a brave and honest reflection shining a light on the pain experienced during a time of life often so hidden from view! For the past 10 years, my unique calling has been to guide families through exactly this. Underestimation, lack of information, coupled with the painful power of simply watching your beloved family member's life end, is a complex and unbearable experience- and can be so different when guided by experience and love. My deepest wish is that as a society we could embrace all the common realities that a precious life's ending brings, and surround those who bear witness to this journey with everything needed to simply soften such a profound and difficult time.
What a wonderfully written post. Simple and clear in its delivery; it doesn't scare the reader who may be making those difficult decisions. It mentions just enough info involved with caring for the terminally ill for anyone who has never worked in healthcare to contemplate and prepare for. (Not everyone is able to clean an individual and their bed when soiled- especially a loved one). A nurse for many years I could swear I've diminished my sense of smell by learning to breathe through my mouth when the situation called for it :).
The cost is a concern always since our resources are finite. When we were looking at treatment options, methadone was less than $30/mo compared to OxyContin at over $400 per patient. Less dysphoria, constipation, concerns about liver or renal function, drug diversion, sleep disruption, doesn’t include Tylenol or an NSAID and can be given by any route of administration. Can be used for pain control with prn dosing for breakthrough. The misconceptions about it kept people from adopting its use but the less frequent dosing and being more clear of mind were pluses for the ones that were on it. Narcophobia doesn’t have a place , specially, at end of life.
Spot on. Hospice, as first begun, was great. You died in a hospice unit attended by trained staff and with your family by your bedside as they were able. Now it's been enshitified for the profit of the owners and you're left with a dying one at home with a visit from the hospice nurse about 15 minutes a few times a week.The wonderful units have been closed. And it's a mess. Turning your house into a hospice unit is not the answer. Ban Pet scans etc. etc. for the elderly (And I'm "elderly.") and you could easily refund the now closed hospice units.
Incredible essay that especially resonates from a physician. My layman sister took this on for our mother and ultimately I found a care home for mom when I saw how much my sister’s quality of life was deteriorating. Mom had Alzheimer’s but could still mostly place familiar faces, but her incontinence and intractability were a tremendous challenge. Even with daily visits, we hated that she died there; staying at my sister’s would have made us all feel better but at great cost to my sister. And we (mostly me) were solely financially responsible for my mother who had very limited savings - hiring the regular care she needed was just not possible because we had no idea how long it would be. She could have had great care for a year or so, but if she outlived that then there wasn’t funds to move her to a nice facility. No easy answers.
I think because so much care of the seriously ill happens in hospitals, we’re never exposed to it until it happens to our immediate family - which is, thankfully, rare. But it also means it’s totally traumatic when it does. To see someone you love so emaciated, so changed, and the bodily functions so catastrophically off the rails, the 24-hr vigils, going on for weeks or months in a long, slow death, you can only get through it by total emotional compartmentalization. And then, after it’s over, processing that sometimes looks like PTSD. I wonder if our tendency to keep away extended family and friends (and especially children) during these times when so-and-so looks so awful and different, in an effort to preserve her dignity and her memory in the minds of others, is contributing to all of us not being prepared for death when it comes to our house. No easy answers. Thanks for talking about it.
Thank you for writing this. While taking care of my dying grandmother in my home as an adult was the hardest thing I’ve ever done, it was also one of the best. At work I make decisions confidently and resourcefully—so different at home with a dying loved one.
By 2060, I doubt there will be enough children available to care for parents. I see the trend now in the SNFs I visit - many patients have no children. Care for many will rely on the system because they have no surviving family. It’s time now to plan for this.
This is sadly true. My mom died at home by herself (we found her). My dad died after a week in the hospital (his heart stopped) during COVID, so I couldn't be there for him. My brother died unexpectedly at home by himself. I've not been with any close family member who died. I fear my three dear children will have that task with my husband or me, but I'm so, so, so thankful I have three kids who love us and want to be part of this conversation about "dying well".
When I was an oncology fellow at the Clinical Center of the NIH, beginning in 1980, the first year fellows who were serving on the wards had a series of regular meetings with one of the psychiatry attendings centered on study of a book called ‘The Denial of Death’ by Ernest Becker, which had won a Pulitzer Prize in 1974 (warded posthumously as the author had died in 1973 at the age of 49). The book and the meetings I found helpful in what was a pretty tumultuous year for me. That book and Elizabeth Kubler Ross’ book ‘On Death and Dying’ formed the basis of my approach to end- of- life issues with my patients and their families over what became a 42 year career in a moderate sized medical institution in the Deep South , along with Psalms, Proverbs, Ecclesiastes and the Gospels. Both my parents died in hospice during that time, my father at 76, and my mother at 94. During those years, at our institution, home hospice, then later a hospice house and inpatient hospice unit were established, all with tremendous community support. As the excellent initial post in this thread makes clear, care of the dying is a difficult,taxing endeavor, but it is surely a worthy work.
She had lived a life of service, giving to others.
She was in the hospital and had been given a death sentence: several critical illnesses.
She understood that they were fatal. The hospital discharged her to my hospice care.
What impressed me most while I talked and prayed with her is that she was at peace. She was not afraid of death. She embraced the inevitable openly. She talked about it matter-of-factly.
As an emergency doctor, my goal was to give people hope and save their lives.
I have fought death all my life.
I have felt his cold hand sucking away my patient’s breath.
I was brave in confronting him as I battled for my patient’s life.
Many times, I was successful.
I tricked him. I made deals with him.
I fought him with all my weapons.
Sometimes that worked.
But in the end Death always wins.
I tried to give Pam a way out. I told her we can fight this disease! That perhaps we could defeat death once again.
But Pam was resolved. God had called her home.
She was totally ok with embracing death.
She knew there was a better life awaiting her.
As King Soliman said, “There is a time to live and a time to die”.
I held her hand all night as she took her last breath.
When that time comes, may we all, like Pam, look to our creator and say, “Oh Death, where is your sting? Oh grave, where is your victory? To be absent from the body is to be present with our Lord”.
Pam knew the Lord was waiting for her with open arms.
Even though I had failed as a doctor she taught me that it is ok to embrace death. All I could do was comfort her.
Thank you, Larry. Your description is vivid and reflects Pam's and your faith, which can be a huge comfort in this process. I too am a retired physician. My mother died in a community hospital on a morphine drip and my father in a nursing home after an aspiration.
I like your barbershop analogy, but it does not fit here. If your mom had a pre-test probability of say, >10-20% of a non-cancerous finding, that's what doctors are for. If an intervention can improve QOL, and it's not onerous or excessive in cost, do it. I felt the emotion of your loss in the essay, and it's not lost on me, but the framing is wrong.
The inpatient hospice at San Francisco's VA Hospital would be an excellent model for how end-of-life care could be done (with the right funding). They do incredible work.
Dr. Meyer, my mother died in a hospice unit at St. Agnes Hospital in Fresno, CA and my father died at home of a subdural hematoma after whacking his head at night during fall in the middle of the night. That, in retrospect, was a unique mercy, since the hematoma took before his terminal cancer did (stage 4 squamous cell carcinoma of the lung that had metastasized to his adrenal glands, esophagus, retroperitoneum, mediastinum, liver, and mesenteries). The hospice worker found him the following morning. He could not talk, but could hear my sobbing goodbye over the phone. I will have nothing but praise for hospice for the rest of my life. Thank you for a lovely, heart-field tribute to hospice and your brave, talented, compassionate mother. Remarkable mothers raise remarkable daughters.
A helpful and heartfelt perspective.
An unbelievably important public discussion.
An unfathomable public policy challenge.
Such a brave and honest reflection shining a light on the pain experienced during a time of life often so hidden from view! For the past 10 years, my unique calling has been to guide families through exactly this. Underestimation, lack of information, coupled with the painful power of simply watching your beloved family member's life end, is a complex and unbearable experience- and can be so different when guided by experience and love. My deepest wish is that as a society we could embrace all the common realities that a precious life's ending brings, and surround those who bear witness to this journey with everything needed to simply soften such a profound and difficult time.
What a wonderfully written post. Simple and clear in its delivery; it doesn't scare the reader who may be making those difficult decisions. It mentions just enough info involved with caring for the terminally ill for anyone who has never worked in healthcare to contemplate and prepare for. (Not everyone is able to clean an individual and their bed when soiled- especially a loved one). A nurse for many years I could swear I've diminished my sense of smell by learning to breathe through my mouth when the situation called for it :).
Again beautifully presented!
The cost is a concern always since our resources are finite. When we were looking at treatment options, methadone was less than $30/mo compared to OxyContin at over $400 per patient. Less dysphoria, constipation, concerns about liver or renal function, drug diversion, sleep disruption, doesn’t include Tylenol or an NSAID and can be given by any route of administration. Can be used for pain control with prn dosing for breakthrough. The misconceptions about it kept people from adopting its use but the less frequent dosing and being more clear of mind were pluses for the ones that were on it. Narcophobia doesn’t have a place , specially, at end of life.
Thank you so much for sharing this Mary.
Adam
Spot on. Hospice, as first begun, was great. You died in a hospice unit attended by trained staff and with your family by your bedside as they were able. Now it's been enshitified for the profit of the owners and you're left with a dying one at home with a visit from the hospice nurse about 15 minutes a few times a week.The wonderful units have been closed. And it's a mess. Turning your house into a hospice unit is not the answer. Ban Pet scans etc. etc. for the elderly (And I'm "elderly.") and you could easily refund the now closed hospice units.
Thank you so much!
Incredible essay that especially resonates from a physician. My layman sister took this on for our mother and ultimately I found a care home for mom when I saw how much my sister’s quality of life was deteriorating. Mom had Alzheimer’s but could still mostly place familiar faces, but her incontinence and intractability were a tremendous challenge. Even with daily visits, we hated that she died there; staying at my sister’s would have made us all feel better but at great cost to my sister. And we (mostly me) were solely financially responsible for my mother who had very limited savings - hiring the regular care she needed was just not possible because we had no idea how long it would be. She could have had great care for a year or so, but if she outlived that then there wasn’t funds to move her to a nice facility. No easy answers.
I think because so much care of the seriously ill happens in hospitals, we’re never exposed to it until it happens to our immediate family - which is, thankfully, rare. But it also means it’s totally traumatic when it does. To see someone you love so emaciated, so changed, and the bodily functions so catastrophically off the rails, the 24-hr vigils, going on for weeks or months in a long, slow death, you can only get through it by total emotional compartmentalization. And then, after it’s over, processing that sometimes looks like PTSD. I wonder if our tendency to keep away extended family and friends (and especially children) during these times when so-and-so looks so awful and different, in an effort to preserve her dignity and her memory in the minds of others, is contributing to all of us not being prepared for death when it comes to our house. No easy answers. Thanks for talking about it.
Thank you for writing this. While taking care of my dying grandmother in my home as an adult was the hardest thing I’ve ever done, it was also one of the best. At work I make decisions confidently and resourcefully—so different at home with a dying loved one.
By 2060, I doubt there will be enough children available to care for parents. I see the trend now in the SNFs I visit - many patients have no children. Care for many will rely on the system because they have no surviving family. It’s time now to plan for this.
This is sadly true. My mom died at home by herself (we found her). My dad died after a week in the hospital (his heart stopped) during COVID, so I couldn't be there for him. My brother died unexpectedly at home by himself. I've not been with any close family member who died. I fear my three dear children will have that task with my husband or me, but I'm so, so, so thankful I have three kids who love us and want to be part of this conversation about "dying well".
When I was an oncology fellow at the Clinical Center of the NIH, beginning in 1980, the first year fellows who were serving on the wards had a series of regular meetings with one of the psychiatry attendings centered on study of a book called ‘The Denial of Death’ by Ernest Becker, which had won a Pulitzer Prize in 1974 (warded posthumously as the author had died in 1973 at the age of 49). The book and the meetings I found helpful in what was a pretty tumultuous year for me. That book and Elizabeth Kubler Ross’ book ‘On Death and Dying’ formed the basis of my approach to end- of- life issues with my patients and their families over what became a 42 year career in a moderate sized medical institution in the Deep South , along with Psalms, Proverbs, Ecclesiastes and the Gospels. Both my parents died in hospice during that time, my father at 76, and my mother at 94. During those years, at our institution, home hospice, then later a hospice house and inpatient hospice unit were established, all with tremendous community support. As the excellent initial post in this thread makes clear, care of the dying is a difficult,taxing endeavor, but it is surely a worthy work.
I only knew her for one week!
She had lived a life of service, giving to others.
She was in the hospital and had been given a death sentence: several critical illnesses.
She understood that they were fatal. The hospital discharged her to my hospice care.
What impressed me most while I talked and prayed with her is that she was at peace. She was not afraid of death. She embraced the inevitable openly. She talked about it matter-of-factly.
As an emergency doctor, my goal was to give people hope and save their lives.
I have fought death all my life.
I have felt his cold hand sucking away my patient’s breath.
I was brave in confronting him as I battled for my patient’s life.
Many times, I was successful.
I tricked him. I made deals with him.
I fought him with all my weapons.
Sometimes that worked.
But in the end Death always wins.
I tried to give Pam a way out. I told her we can fight this disease! That perhaps we could defeat death once again.
But Pam was resolved. God had called her home.
She was totally ok with embracing death.
She knew there was a better life awaiting her.
As King Soliman said, “There is a time to live and a time to die”.
I held her hand all night as she took her last breath.
When that time comes, may we all, like Pam, look to our creator and say, “Oh Death, where is your sting? Oh grave, where is your victory? To be absent from the body is to be present with our Lord”.
Pam knew the Lord was waiting for her with open arms.
Even though I had failed as a doctor she taught me that it is ok to embrace death. All I could do was comfort her.
Pam, We will see you again over there.
Owner of Inspiration View, RAL
Thank you, Larry. Your description is vivid and reflects Pam's and your faith, which can be a huge comfort in this process. I too am a retired physician. My mother died in a community hospital on a morphine drip and my father in a nursing home after an aspiration.
Thanks for your kindness. God bless you
I like your barbershop analogy, but it does not fit here. If your mom had a pre-test probability of say, >10-20% of a non-cancerous finding, that's what doctors are for. If an intervention can improve QOL, and it's not onerous or excessive in cost, do it. I felt the emotion of your loss in the essay, and it's not lost on me, but the framing is wrong.
The inpatient hospice at San Francisco's VA Hospital would be an excellent model for how end-of-life care could be done (with the right funding). They do incredible work.