The challenge to ending up with a better solution than the Waiting Room is being willing to admit things are changing as one's abilities are diminishing! My mom wanted more than anything to stay in the home my parents had built. But a couple of years after my dad died she folded in on herself psychologically and refused the help she needed to maintain herself there safely. Try as we might she wouldn't address with us how things were deteriorating. When she fell and broke her hip, she insisted she could return there. It was heart-breaking to say no but unsustainable to agree to.
It is often that resistance that forces families into the Waiting Room scenario. Hal, your proactive delineation of what you want regarding the end is a gift to your loved ones, as is realistic conversation about the intervening years. It is hard work, but powerful when done lovingly.
Thanks, as always, for your thoughtful comments, Kris. Yes - these situations change, and both elders and their adult children are often thrown into situations where the options are few and not optimal. My sister and I ran into that with my father about 15 years ago. He had continued to live (contentedly) for 8 years after my mother passed in the "God's Waiting Room" independent living place. But a sudden, severe, undiagnosed case of shingles nearly killed him. GET YOUR SHINGLES VACCINE, PEOPLE!! We had to quickly move him into the "health unit" of the place, and it was terrible -- really terrible. We worked very hard to get him improved enough to get on a plane (it was touch and go until he buckled his seatbelt) and on his way (with us) to an assisted living place across country near my sister, as I was also in transition at that time. He had a few good years there -- my sister visited him every day, bless her - but then they turned him out, because they said they couldn't meet his needs any more. Another horrible thing. And then onto yet another place, where he fell on the first night he was there and then declined quickly. We do need to keep thinking about, talking about, and doing research about these things --- and yes, always with love. Gawande cites a number of places that were doing some innovative things -- I'm going to do some googling around and see what's happening with them these days. I hope that my Quality of Life Statement will provide both guidance and assurance to my kids --- but there are also the realities that don't always fit.
How extremely poignant! It really brings back with sadness, the end of our parents lives. Now that we are approaching this part of life, I agree that I want to live to the fullest. Unfortunately, sometimes, Mother Nature has a cruel roadblock for us that we did not see coming. Live each day as fully as you possibly can. Make it count. Leave your footprint in the cement!
Dear Deb, Thanks for sharing your thoughts. Both our parents had tough, but different, endings. You are so right that, despite all our plans and best intentions, Mother Nature sometimes moves differently. I totally agree we should live each day as fully as possible. Sometimes we are thinking so much about the past or worrying about the future that we miss what is right in front of our noses. With you!! (Remember "Logan's Run"??)
Thank you so much for your thoughtful post, and for sharing that poignant poem, Mary Oliver is one of my favorite poets. Off to Google quality of life statements, appreciate the suggestion.
Hal, thoughtful essay—thanks. I’d enjoy discussing these issues sometime. I’ve been exploring issues of death and dying for a while, including reading books on the subject.
If you like “Being Mortal” you might also like “That Good Night” by the palliative care physician, Sunita Pura. She describes her passion for the field and her experience working with health care providers, patients, and families. As you might imagine, some are receptive to her approach and others are definitely not.
I think people sometimes confuse palliative care with hospice and hospice with “giving up.” They fear doctors will give up on them. Patients hear about unexpected rare recoveries and about patients who are told conflicting information—one oncologist says they have no chance of survival and another gives them hope and recommends treatment. It makes patients wonder if an effective treatment is out there if only they persist.
I was lucky to connect with palliative care early, just after diagnosis—thanks to my husband and oncologist—and I’m lucky to have an outstanding palliative care doc. Unfortunately not everyone has access to palliative care.
I wasn’t prepared for the possibility of death. I believe that’s probably changed, but you never know until you face it. Survival gave me time to explore—to come to terms with it; many do not get time.
I’ve got four questions from “Being Mortal” on my iPhone so I’ll have them when I need them: 1. What is your understanding of the situation and its potential outcomes? 2. What are your fears and what are your hopes? 3. What are the trade-offs you were willing to make and not willing to make? 4. What is the course of action that best serves this understanding?
I started reading about death and dying after my sarcoma diagnosis and continued with it because I manage a sarcoma support group where many die. There have been times when I thought I should stop because the grief was bad—and at one time I was advised by a counselor to stop, but I decided to continue, and kept exploring and now, though it’s still often sad, it’s become part of life. Death is part of life.
Like you, I rewrote my health care directive after caring for my dad and aunt at the end of their lives. Nothing like that experience to make clear the ways an earlier version falls short. It’s a worthwhile process and document, but hard to predict the situations we or our caregivers will face. As a caregiver I sometimes found it hard even with a directive in hand. Thankfully I’d had conversations with my dad and aunt that gave me a good grasp of their wishes. Interestingly, their health care providers looked to me, not documents, to make healthcare decisions. This despite my dad having a POLST, signed by his physician, spelling out his wishes in clear terms. That experience reinforced the importance of talking with those who will be responsible for our end of life care. I’d be glad to talk about other favorite books if you’re interested. Lynn
Dear Lynn, Thanks for sharing your experiences -- such hard things that we need to figure out on the fly. I agree about the essential and unheralded roles that palliative care doctors / nurses and hospice staff and chaplains play --- I found it strange that the process for involving them was almost like flipping a switch. One day, the hospital docs and nurses are doing everything possible to restore health (horrendous and futile), and then the switch flips and the whole new world of empathy and caring opens up. I don't think they need to be that discontinuous, but that was just my experience. It's great that you have those questions on your iPhone. When times like that come, it's important to have reminders like that, lest we be flooded by the panic of the moment. The other question of his that I like a lot is "What is a good day for you?" How novel -- to ask the patient directly rather than to assume you know!!! I look forward to discussing further and to hearing about the resources you've discovered. Life-long learners, we are!
Ditto with what Jane said!
The challenge to ending up with a better solution than the Waiting Room is being willing to admit things are changing as one's abilities are diminishing! My mom wanted more than anything to stay in the home my parents had built. But a couple of years after my dad died she folded in on herself psychologically and refused the help she needed to maintain herself there safely. Try as we might she wouldn't address with us how things were deteriorating. When she fell and broke her hip, she insisted she could return there. It was heart-breaking to say no but unsustainable to agree to.
It is often that resistance that forces families into the Waiting Room scenario. Hal, your proactive delineation of what you want regarding the end is a gift to your loved ones, as is realistic conversation about the intervening years. It is hard work, but powerful when done lovingly.
Thanks, as always, for your thoughtful comments, Kris. Yes - these situations change, and both elders and their adult children are often thrown into situations where the options are few and not optimal. My sister and I ran into that with my father about 15 years ago. He had continued to live (contentedly) for 8 years after my mother passed in the "God's Waiting Room" independent living place. But a sudden, severe, undiagnosed case of shingles nearly killed him. GET YOUR SHINGLES VACCINE, PEOPLE!! We had to quickly move him into the "health unit" of the place, and it was terrible -- really terrible. We worked very hard to get him improved enough to get on a plane (it was touch and go until he buckled his seatbelt) and on his way (with us) to an assisted living place across country near my sister, as I was also in transition at that time. He had a few good years there -- my sister visited him every day, bless her - but then they turned him out, because they said they couldn't meet his needs any more. Another horrible thing. And then onto yet another place, where he fell on the first night he was there and then declined quickly. We do need to keep thinking about, talking about, and doing research about these things --- and yes, always with love. Gawande cites a number of places that were doing some innovative things -- I'm going to do some googling around and see what's happening with them these days. I hope that my Quality of Life Statement will provide both guidance and assurance to my kids --- but there are also the realities that don't always fit.
So powerful, Hal. So human. Yes, to Mary Oliver's poem!
How extremely poignant! It really brings back with sadness, the end of our parents lives. Now that we are approaching this part of life, I agree that I want to live to the fullest. Unfortunately, sometimes, Mother Nature has a cruel roadblock for us that we did not see coming. Live each day as fully as you possibly can. Make it count. Leave your footprint in the cement!
Dear Deb, Thanks for sharing your thoughts. Both our parents had tough, but different, endings. You are so right that, despite all our plans and best intentions, Mother Nature sometimes moves differently. I totally agree we should live each day as fully as possible. Sometimes we are thinking so much about the past or worrying about the future that we miss what is right in front of our noses. With you!! (Remember "Logan's Run"??)
I agree and remember “Logan’s Run”!!! Wasn’t it 30 or 35 for termination? Seems so young now!!!
Yes, I think it was 30 or 35!! I suspect that no matter how old you are, you’d want to push that date out further!
Thank you so much for your thoughtful post, and for sharing that poignant poem, Mary Oliver is one of my favorite poets. Off to Google quality of life statements, appreciate the suggestion.
Thanks for your comment - and yes, Mary is an inspiration. Happy googling! If you don't find anything, let me know.
Hal, thoughtful essay—thanks. I’d enjoy discussing these issues sometime. I’ve been exploring issues of death and dying for a while, including reading books on the subject.
If you like “Being Mortal” you might also like “That Good Night” by the palliative care physician, Sunita Pura. She describes her passion for the field and her experience working with health care providers, patients, and families. As you might imagine, some are receptive to her approach and others are definitely not.
I think people sometimes confuse palliative care with hospice and hospice with “giving up.” They fear doctors will give up on them. Patients hear about unexpected rare recoveries and about patients who are told conflicting information—one oncologist says they have no chance of survival and another gives them hope and recommends treatment. It makes patients wonder if an effective treatment is out there if only they persist.
I was lucky to connect with palliative care early, just after diagnosis—thanks to my husband and oncologist—and I’m lucky to have an outstanding palliative care doc. Unfortunately not everyone has access to palliative care.
I wasn’t prepared for the possibility of death. I believe that’s probably changed, but you never know until you face it. Survival gave me time to explore—to come to terms with it; many do not get time.
I’ve got four questions from “Being Mortal” on my iPhone so I’ll have them when I need them: 1. What is your understanding of the situation and its potential outcomes? 2. What are your fears and what are your hopes? 3. What are the trade-offs you were willing to make and not willing to make? 4. What is the course of action that best serves this understanding?
I started reading about death and dying after my sarcoma diagnosis and continued with it because I manage a sarcoma support group where many die. There have been times when I thought I should stop because the grief was bad—and at one time I was advised by a counselor to stop, but I decided to continue, and kept exploring and now, though it’s still often sad, it’s become part of life. Death is part of life.
Like you, I rewrote my health care directive after caring for my dad and aunt at the end of their lives. Nothing like that experience to make clear the ways an earlier version falls short. It’s a worthwhile process and document, but hard to predict the situations we or our caregivers will face. As a caregiver I sometimes found it hard even with a directive in hand. Thankfully I’d had conversations with my dad and aunt that gave me a good grasp of their wishes. Interestingly, their health care providers looked to me, not documents, to make healthcare decisions. This despite my dad having a POLST, signed by his physician, spelling out his wishes in clear terms. That experience reinforced the importance of talking with those who will be responsible for our end of life care. I’d be glad to talk about other favorite books if you’re interested. Lynn
Dear Lynn, Thanks for sharing your experiences -- such hard things that we need to figure out on the fly. I agree about the essential and unheralded roles that palliative care doctors / nurses and hospice staff and chaplains play --- I found it strange that the process for involving them was almost like flipping a switch. One day, the hospital docs and nurses are doing everything possible to restore health (horrendous and futile), and then the switch flips and the whole new world of empathy and caring opens up. I don't think they need to be that discontinuous, but that was just my experience. It's great that you have those questions on your iPhone. When times like that come, it's important to have reminders like that, lest we be flooded by the panic of the moment. The other question of his that I like a lot is "What is a good day for you?" How novel -- to ask the patient directly rather than to assume you know!!! I look forward to discussing further and to hearing about the resources you've discovered. Life-long learners, we are!