Love. Comfort. Recognition. Just what I needed today. Thank you.
2
Had to go all the way to the last comment for the insight that refusing chemo is less uncommon now.
Karen Anne Quinlen taught us all a great deal about death and dying.
The comment by Jippo about half way down pointed out the hospitals are for those persons who are afraid of dying.
Ask yourself: am I afraid of "being dead" or of the "Process of dying". 2 different thins.
As a young man with many hours in church, I was very afraid of being dead. As a 29 years old physician in 1964 I was doing the ophthalmoscopic exam on a routine physical in exam room one in my office when that fear suddenly left me. It has not returned and I am 84, had angioplasty and stent of a 95% stenosis in my LAD and feel good, despite new diagnosis of diabetes and "skinny fat"! A year ago my home and family possession of multiple generations burner to cinders. Hard way to downsize but about to move back to rebuild on same site. No injuries as I fled the fire, and joy as Nancy Van Camp has kept me at her place for the year and is moving back with me.
When practicing I routinely offered the following end of life plan to patients of all ages on their annual exam and it was universally accepted:
If you can fix me, please do. If you can't fix me, please help me avoid pain, fear, air hunger, nausea, thirst, loss of my dignity, and prolonging the dying process. I understand it may take a couple of days to be able to tell whether you can fix me or not.
5
Beautifully expressed! Of all people, medical oncologists should recognize the point where treatment becomes futile in given patients-- to say nothing about it being an expensive waste of precious, usable time in this life!
1
@Dr. Sam Williams [email protected] is my email.
Sam, insights evolve same as technology does. And learning when and if to apply them.
Some people are afraid of 'being dead' as we all know our sins and they fear fire and damnation, and anything that postpones such for even a day is worth suffering you and I would never bear, especially if someone else if paying he bill.
Thank you for sharing your families story.
I remember a Professor of Medicine lecturing to medical students in the 1970's. He said, "Its a doctors job to extend living, not to extend dying".
What an incredible road map for all of us.
When I speak with patients and their families and offer this statement, it is as if a light of clarity appears.
Patient and family are assured that we can keep people comfortable while they are dying.
With that in mind the path is much easier.
The earlier we have these conversations with patients the easier it is for them to come to grips with their life process
4
As an eye surgeon, I missed most of these issues professionally but still remember the tortured process of ICU deaths I witnessed in my early training. A cousin related the distress of listening to her own mother change her mind to "do everything" in her final days. Though I think I would choose to follow your father's example, I am reminded of the stories of soldiers in WWII who dismissively talked of "taking a bullet" rather than coping with disfigurement or limb loss. To a man, they fought back for whatever the rest of life could offer them. I hope I don't face those choices but certainly hope I can face them like your father. Thanks for a compelling story
2
I am a retired Urologist and turned 75 yesterday. I am in decent health and just published my first novel. I have expressly told my children that I want no extraordinary measures to keep me alive. I want to die in my bed surrounded by those I have loved if they can make it. If they can't I won't be disappointed, it means that they are busy doing something constructive. Seventy-five is a great age! I can enjoy going for a walk, reading a book, and writing stories on my computer. I stilll enjoy looking at a good-looking woman through the eyes of imagination. No more colonoscopies and PSA testing for me. Guess I am like your father!
3
I feel you are correct in feeling we are trained to keep people alive, no matter the prognosis or quality of life, our primary focus is the ventilation of the lungs and the cardiac output. The medicine physicians, surgeons or other specialist will do the fine tuning. With 27 years in EM I can look back and realize it took me several years to realize there was more to it than that. My father died of idiopathic pulmonary fibrosis while waiting for a transplant. He made it clear to me that he didn't want to ever be mechanically ventilated, and he didn't want to die in a hospital. Over a 48 hour period he declined dramatically to the point I knew there was no return. His pulmonologist had prescribed IV morphine for his dyspnea, and I started bronchodilators, antibiotics, and antifungals. My wife called a few hours before my night shift ended and kept me informed of his sats. When the day shift came I rushed home. Dad was still coherent and trying to maintain good spirits, but watching his sats slowly go down I knew what was coming. I had to call my brother knowing that when Dad saw him Dad would realize what was happening. Dad said he never wanted to suffocate, never wanted to go to the hospital. I could see the fear in his eyes when he told me he felt like he was smothering. I touched him with some morphine for the dyspnea. Calls had been made. Mother, 2 sons, nephew, sister all sat by his bedside and talked with him, holding him as he passed with dignity wished.
4
@Mark Mark, my brother in law died of the same condition at age 55. He was in a small town hospital and I was unable to get his GP to releve his dyspnea. He died the most terrible death with fear embedded on his face...
1
Simply beautiful! As a retired surgeon, I can look back on numerous patients, and a few beloved family members over the years who faced the same fork in the road. Many -- probably most -- choose to "do everything possible," to fight to live a bit longer. We owe it to them to help them fight that fight. Some, valuing their independence and dignity more than the prospect of adding what may be sick, painful, often humiliating months to the end of their full lives, choose the road Ms. Hemp's father took.
Whether as physicians or as family members, it our absolute responsibility to make sure, however painful and uncomfortable the conversation is, that each person understands the choice he has, and what will be involved, for better or for worse, whichever path he chooses.
Death, for 100% of us, is inevitable. The best is simply not to wake up one morning, but for most, modern medicine has provided at least the hope of pushing the Grim Reaper back into the closet for another day. But he will be back. To the maximum extent possible we must have the choice to make that inevitability as comfortable and dignified as possible.
1
My Dad had many of the symptoms of kidney cancer. This was about 5 years after Mom died, which he never got over. He told his doctor he didn't want surgery or intervention, he just wanted palliative care for the lymphedema. The doctor dismissed him as a patient. I don't feel bad in saying I hope that doctor is put in the same position as my father someday.
7
@Anne Hajduk Sad your urologist had no other skills.
1
A beautiful inspiring story - but this family is fortunate. Many well-meaning hospital social workers begin the paperwork to have the patient declared incompetent to make his own decisions - only THEY get to make his medical decisions. He may then be assigned a guardian by a judge, loses all his Constitutional rights and is legally a minor under the authority of the guardian - who may be a stranger, and who may also bilk the estate dry. This happened to actor Peter Falk when he developed dementia, whose daughter Catherine had to fight for 5 agonizing years to see her father again. The National Association To Stop Guardian Abuse fights this evil, but it continues, especially in states like Florida and Nevada. Have your Living Will in order - and even then, a judge can countermand it. A horrifying, silent social scandal that will soon erupt as the population ages.
8
Such a beautiful story, it has brought me to tears over breakfast. My sister-in-law was diagnosed with several cancers and initially told us of all the things she wanted to do before she died. However, she was convinced by an oncologist that she had a chance of living 3-5 years and took it. She lived less than a year, and it was hard to even see her between her many appointments and treatments. She didn't get to do any of the things she wanted. Your father is a courageous man to buck the system, but it will be worth it.
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Beautiful story!
2
Very moving. thank you for your beautiful writing and for sharing this.
4
Thank you so much. My Dad died of the same thing and I too was there to see him on his way. I've been angry at him for not wanting to fight but I think he too had done what he came to do and just wanted to be set free. Thanks.
6
Moved to tears by this beautifully written piece. Thank you so much for sharing.
4
Very well written. For those of us who have traveled a similar journey with our Dads, reading this brought tears to my eyes. Currently in St Petersburg, Russia, on the way to a ski outing in the Pyrenees: My passport is also ready.
5
In had CLL at age 36!! The great Kanti Rai was my doc. The grandfather of CLL. He believed strongly in QOL. We didn't start chemo until my WBCs reached 296,000!!! Nothing worked. I had an allo sct in 2009. Now oral meds are keeping CLLers alive longer. Carpe diem!
4
This is a really lovely and moving piece; thank you for sharing it. What a gift that your Dad was able to make this decision and that you and your siblings could support him.
15
Thank you, Ms Hemp, for bringing a smile to my face, and a tear to my eye. While my father passed in the 90s, after much chemo and experimental treatments, he and I had a similar time... he saw my (long gone) grandmother in the room. "But she was just here, standing next to you.". And we were dashing through Charles De Gaulle "looking for the guys" we were to meet. I had never been to Paris with him, his favorite city, but I was, on that 'trip'. He died about an hour later.
Each time I return to the city of lights, I light a candle in some ornate cathedral, even though he raised me UU. It just seems appropriate.
14
On Tuesday last I rode home in a medical transport with my father from a stand alone hospice in Zhills, FL to my parent's home in Michigan. He's back to being king of his castle in a hospital bed in his living room.
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@C.
Best to your father, you and your family.
So beautiful. Wow. The power of a simple story, eloquently told....
Thank you to the writer, her marvelous father, and the New York Times.
18
Canada has had medically assisted death called MAID for a while but the law had restrictions. Canadians and the supreme court sent a very clear message to government that these restrictions should be removed. New legislation is coming soon.
I have friends whose family members have chosen this option. They have all said it was a civilized and compassionate experience for their loved ones.
I will definitely chose MAID when my time comes.
13
This is beautiful, Christine. I feel lucky to have met your dad several times, and witnessed the special relationship you had with him. You know how lucky you are to have had him love and inspire you, just as he was lucky to have your love.
13
Beautiful story, sorry for your loss. But thank you for sharing. Hugs ....
7
The last paragraph did me in.
We do indeed all have our passports, and we'll all be taking later planes.
I was the youngest in my once-large extended family and am now the last one who remembers my grandparents.
Waiting for that later flight, despite other attachments and pleasant occupations, can be lonely.
21
The price of love is grief, and in grief we seem to unite. Nothing else bonds us so intimately. Everyone understands loss. Just read these comments.
17
i am 82 years old, have bone cancer (spread of prostate cancer) from head to toe and have made the same choice as your father. Currently in home hospice care, i await the inevitable after 50 years of university teaching in the USA, Colombia, India and Turkey, a husband of 38 years, 3 beautiful children, I admire, respect and am following the same choice as your father. We live "beyond mortality".
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@john Beautiful, John. I wish you peace.
12
@john Thank you. May you have comfort and peace.
1
This one is an arrow to my heart.
This could have been my father in 1982-'83.
Same disease. Same (ultimate) choice -- to stop.
Spent last several months while still (relatively) able and not under treatment's most severe debilitation doing things meaningful to him:
-- Family-related, whether it was going shopping for a special memory with me, organizing, labeling, filing all his papers, all the financials (sparse though they were), all medical, so it would be easy for my Mom.
(And me, when the IRS audited his return later that year, addressed to his name, followed by 'deceased.' I kid not. That auditor couldn't find a single penny not exactly as properly specified on returns. Thanks Dad!)
-- Taking religious instruction and finding much comfort and peace.
That last 9-10 days, as our small family stayed with him ... this is related in this piece in such a way as it all comes racing back, clear as if yesterday
He was only 59 ...
Ms. Hemp, I am sorry for your loss, and your Dad's illness and passing.
And also, yet ... what a triumph of self-determination.
I feel the same for my own father's courage and course chosen. Admiration and gratitude have only grown over the decades, as I get much closer to offering up my own 'passport.' And I will choose my Dad's way.
22
Beautiful and moving telling of your father once more charting the course of his own adventure. Thank you. Brought tears to my eyes.
18
Beautiful! Thank you for sharing. Your father was clearly a wonderful individual and an inspiration in your life (and now mine).
20
Beautiful. I'm still holding onto my passport, to join my beloved husband.
18
This piece took my breath away. Nearly 7 years ago I was an offsite meeting for work that ended early. Our boss said -- go and do something fun. I decided to drive out from NYC to visit my mother in a nursing home on LI. She had been there for nearly a year and I was normally only able to see her on weekends. The nurses had told us that it would not be long -- she was showing the signs of end of life, but a few weeks had passed and she seemed stable. In fact, she was having a very good, lucid day. I sat beside her and she turned to me smiling and looked me straight in the eye. She looked so radiant and present -- her blue eyes were shining. I smiled back and said "What are you thinking about, Lady" and she said "Oh, going on a trip." I gave her a kiss and said, "Can I come?" And she smiled and said in a teasing tone "Oh, I don't think so." She may have stuck out her tongue and crinkled her nose -- it was a signature move. We spent another hour or 2 chatting about nothing much and being with each other. I left happy to have made the visit and woke up the next day to a call from my sister than she had passed. I am always grateful I had that moment with her but also struck that I did not realize she was saying good bye. I think of that moment often, but it never hit me quite as hard as reading this beautiful piece. So now I am crying and also smiling in a conference room at work...thank you for sharing your story.
90
The original piece is moving and beautiful...and your comment is equally so. I’m very happy you had this wonderful, serendipitous last visit with your mom. Thanks for sharing it with us.
18
This is the most concise and effectively-rendered essay on this topic I've ever read. Thank you, Ms. Hemp for honoring your father's wishes and for sharing your story. You get it.
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My father died last April at age 90. He had known for a few months that something wasn’t right but doctor appointment wait times meant he knew he had lung cancer at the end of January but the first appointment with the surgeon/oncologist was March 27. (He was never a smoker) By this time, he had grown quite frail and weak and had decided that he wouldn’t want any chemo or other such treatments. On March 27 he heard what he already knew in his heart, that he had Stage 4 Lung Cancer and that palliative care was the only option. Along with my two sisters I was honoured to witness my mom and dad discuss end of life options with the Home Care Doctor in their apartment bedroom. They both desired that dad go to a local hospice where they’d previously visited a friend. Dad wanted mom to be able to come home after a day at the hospice to a peaceful home free of personal care workers and nurses. By April 4, Dad was in a beautiful hospice where both he and our family experienced the most extraordinary care. In a home-like setting with caring staff, dad continued to make his wishes known until he couldn’t. Three days before he died he spoke anxiously of trains and schedules and getting to the station on time. We assured him that we’d make sure he arrived in time. He died April 12. We learned to understand death and watched as he took each day in his stride in peace both accepting and giving love. Thank you for your beautiful story.
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Doctors have bills to pay and I can’t help but wonder if that clouds their medical opinions a tad. I believe I would have made the same decision as her father did.
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@Vee Very harsh indeed.
1
What a wonderful story. Thank you for sharing it.
28
When my mom started to get close to dying, she told me she saw flowers everywhere. She knew they weren’t really there, and told me she’d started to be able to see the other side. Then three weeks before she died, she dug out a suitcase and began frantically packing, but her explanation why made no sense. I was distraught by the hallucinations and missed the symbolism. A week later she entered hospital hospice and lasted 14 days. At the end of your story I felt a twinge of envy that you understood your dads comments about the passport in real time. I would hope that everyone who reads this remembers the “going somewhere” symbolism if a loved one presents. It would be such an opportunity to respond with appropriate comfort for the coming trip. A beautiful story.
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@Burph : And what a lovely response. The "symbolism of going somewhere." Remember that time is elastic...perhaps your mom is reading your beautiful account of her departure right now.
17
This peace was absolutely beautiful. I am an 84 year old with a number of health issues, but am not in a critical state: however, I do think of the end which inevitably comes. I share with my children the way I want things to be when the time comes, and they are grateful that I have shared my plans with them. Dear Ms. Hemp--you are a beautiful write and a beautiful person.
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@Joan Silverman I am honored to receive this message. With all of your earned wisdom and heart. Thank you.
31
Christine Hemp, thank you for sharing this lovely essay. Your father’s experience can teach us all a lot about living, and dying, well. You are lucky to have had such a wonderful dad!
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@Mary Owens Yes, I am fortunate to have had such a father. There's more of him in my book --coming out a week from Tuesday.Thank you for your kind note.
11
My dad made the same choice after years of treatments, surgeries and hospital visits. Despite the years of illness, he never lost his sense of humor or his sense of wonder. Near the end, though, I too asked whether he was afraid to die. He immediately responded, "No! I've had a wonderful life." It was true, and I respected his decision to have it end on his own terms, but it was still terribly difficult and I miss him to this day.
40
@Susan -- Isn't it interesting how we share parallel experiences. Peter Hemp's presence is all through my new book and I, too, miss my father "to this day."
9
A gorgeous and loving tribute and piece of writing. Thank you for sharing this!
20
He lived a full and happy life. It's not the time on earth, it's what we do while we're here.
24
Oh, wow—love your dad and love your writing. Beautiful!
19
I'm in tears as I write this, thinking of a young friend who decided to stop the cycle of chemotherapy that was no longer working. She was a world traveler too, and would have loved your dad.
Thank you for this immensely moving and gorgeously written story. I'm so sorry for the immeasurable loss of your dad, so brave in so many ways.
35
Thank you. I will remember this.
17
The day before my dad, under home-hospice care, died, he asked me, "Where's my stick? I think I'll need it." He was referring to a handmade walking stick, a 90th-birthday gift from his cousin, which held great historical meaning for his family. I retrieved his stick and placed it where he could see it, inside the door to the bedroom he had shared with my mother for over 40 years. I always hope it helped him on his way.
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Beautiful. I so admire people who stand up for what is right for them against a medical system that only cares about money, not about what is right for the individual. He had a good life and a good death. Bravo.
31
@BA The medical system doesn't only care about money. The medical system is set up for people who are afraid to die. Likewise, for profit hospitals are a mistake.
9
@BA CLL is a treatable condition and treatment can greatly prolong life while allowing patients to continue living at home. It wasn't the right choice for this patient, but sanctimonious judgement of his doctor isn't right either.
Through tears, I write this. What a beautiful tribute to your father and something beautifully written and poignant.
How many of us have had to help usher a parent into the unknown? And, how many of us have done it with this kind of grace and clarity?
Ms. Hemp, every line of this article has a poet's stamp upon it. Thank you for this and for the early morning heart-wrench, which will highlight my day.
71
this is one of the most beautiful things I have ever read- thank you, and you dad
44
@diane
Thank you, I was going to respond with the same words that you have said so well.
15
Beautiful and reassuring, we just buried my mother after a long decline from Alzheimers. She went in hospice and had already provided a properly-worded DNR order that forbade intubation, thereby sealing her fate. Her death was peaceful and we could all acquiesce to her demise without conflict of any kind. More emphasis on permitting the suffering terminally ill patient to die naturally and forego the expense and torture of being kept "alive" solely to enrich a greedy ugly doctor is needed in the USA...
30
My mother at age 88 was feeling that her energy level was not what it should be. Blood work up and bone marrow biopsy revealed multiple myeloma. Her oncologist suggested a course of chemotherapy, my mothers question “will I lose my hair”? Doctor said yes, my mother said no to chemotherapy, drove to age 95, died at 100. This is rational, patient centered medicine approach. The self determination of treatment in the informed patient is the correct way to practice.
116
The availability of an inpatient hospice unit allowed this man to come to the end of his travels in dignity, with family present but not burdened by caregiving responsibilities. Those units are rare, and community hospice houses struggle to stay afloat financially.
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@mary
Yes, I agree 100%. My husband was in the hospital 44 days, a rehab for 2 months, and an inpatient hospice facility for 6 days. Medicare paid the bill in its entirety. He was able to have THE BEST care from everyone he loved with compassion and dignity. What a gift the family was given.
18
@mary
Agreed! When my father faced this same disease and chose this same course, it was in the early '80s.
And he was only 59.
Fortunately, health care then was also very different. My father's primary care physician was also the Director of Medicine, and he knew both my parents well.
With so-so insurance ... he was still allowed to be admitted as an in-patient to a private and quiet room in the hospital for the final 10 days. Received compassionate nursing 'comfort care, and my brother, his wife and I were there constantly.
It was a godsend, his in-patient placement, as my mother was being checked in same hospital two floors up, to get the first of her two hip replacements. She was essentially unable to walk on her own ... so they wheeled her in to see him the day before he died and the morning he passed.
The next day she had her surgery. And they KEPT her there, for the full 3 weeks between the first replacement and the 2nd, and she got all her post-op therapy there, as an in-patient.
I remain grateful beyond measure that we, the children, as fairly young people (25-30), didn't have to 'juggle' two facilities, etc.
It was a true gift.
And unheard of today.
16
Christine, Thank you so much for this essay and for modeling such honest and loving end-of-life care.
I hope your dad's oncologist reads it and understands that for some patients, the decision to drop out of treatment is more than a decision to die, but just as much a decision to live the final weeks of life on terms of integrity and personal meaning.
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If only we all were so lucky: to live life fully and die with dignity. As a physician and a hospice volunteer, I find it curious that the oncologist, as depicted, is so dismissive of the patient’s skepticism about embarking upon chemo. To my experience, refusal to pursue chemo is not a rarity.
57
@Frank The story takes place in 2003. Perhaps refusal to do chemo is less uncommon these days.
17
@Frank
Oncology is a profitable belief system.
They have no central database of cancer patients
and their live's stories. I wonder why they turn away?
It will eventually appear despite them.