Such an important topic. My Mom ended up with alzheimers and I had to make an awful lot of decisions. I do wish we had talked more about wht she would have wanted.
I am sorry you went through this with your mom. I hear so many people say they wish they talked more about it. It’s hard, no one likes to usually even think about death. Even me sometimes and I’m very used to the concept. Thanks so much for sharing. 🩷
Thanks Kristin, for making the point about respecting patient’s wishes. My father spent 10 years in a nursing home with dementia. I remember the conversation about signing the directive, he was still in denial about having the disease, so l asked him if he wanted the government or me to make decisions when he couldn’t, so he signed. 🤣My partner died at home from MND, l thank whatever ‘powers’ had him be able to have his mental faculties despite the fucking horror of watching someone become a prisoner in their own bodies. At one stage l remember a local GP telling me he might have to go to hospital. Thank god for his palliative nurse who on a visit told me that they can’t force him to go to hospital against his wishes and that palliative nurses look to the people who are caring for them. She is an angel and she empowered me to care for him, both emotionally and practically, at home, otherwise the system would not have respected his wishes. So, hooray the system needs warriors like you … angels without wings is what you are. I developed a friendship with Catherine and still see her. I am forever grateful for the care and connection she made with John and l. My mother was also fortunate enough to die at home, her wishes weren’t respected. She wanted to die at home and the hospital didn’t want to release her. It took me a week to get her out of the hospital (she had been in for 3), she made it home for the weekend and died in the Monday night while l was holding her hand, as she wanted! The palliative nurse who came to our house once a week while John was ill told me they wouldn’t have wanted Mum home because of the ‘bother’ of doing all the paper work etc when they knew she was about to die. So, the Australian health care system is flawed too. Thank you for your engaging writing about such important topics and for your down to earth approach … and clearly, the care you give to your job. And thank you for hanging in there.
Hi Simone, thank you for sharing this with me and the rest of the readers. I struggle with writing sometimes, I don’t want to upset people, just want people to have a better idea of what happens when sort of trapped in the system. Sometimes people want to die at the hospital, and that’s always an honor for us too.
I’m so sorry to hear your experiences went the way they did. It’s heartbreaking and I’ve been on all sides of the equation. In the US there is something called a POLST order that can be very helpful. Basically it’s a directive for home and nursing home use that says what the patients wishes are, if they even want to go to the hospital at all. Sometimes family members feel scared and come to the hospital. It’s tough all around. Thank you so much for your kind words. It makes me sleep a little easier knowing my intended message reached you, so thank you for that ❤️
Thanks Kristin, l share your struggle about not wanting to upset readers, in and around experiences of grief etc. Aus has what we call an ‘advanced care plan’, which frankly isn’t worth the paper it is written on unless there is a family member who is watching, and even then, it can sometimes be impossible to combat them, simply because you need know,edge to question. Long story short, my mother split her eye, right around. They had taken her pupil out and wanted to sew her eye under local because she couldn’t have a general. I was in hospital with her arguing with the surgeon. 10 minutes after l left the hospital, they rang to say she was going under a medical emergency procedure. It was the first time they had sewed an eyeball back like that in any patient under local. She ended up losing the eye anyway. When I recent,y asked my GP, that perhaps they did it as an experiment, she said probably. Anyway, sorry about my rant. I won’t start about one of the nursing homes my father was in! So, l really do understand what nurses have to endure in maintaining care and dignity for their patients and what you can be up against. Thank you too, for your kind thoughts and message. 🙏
Thank you Kristin. This gets to the heart of one of a nurses most important duties, presenting factual information to people in crises. I began my nursing career in 1984 and worked 28 years in ICU. There’s been a lot of changes in that time. One of the most important is the autonomy given to nurses to make decisions based on a clients best interest. When I started, many physicians would use their perceived power to just plain lie to patients and family about their condition and prognosis, leaving it to the nurse to present the truth without seeming to contradict the Dr. It was a tricky skill to master. These physicians weren’t very popular among ICU nurses. Over the years, the growing autonomy of nurses helped lead to the “education” of many new critical care physicians. People want and deserve the dignity and respect to know the truth as accurately as we can present it.
Hi Frank.. thank you so much for commenting. I definitely look forward to hearing more of your perspective! I can only imagine all that you’ve seen and experienced in those days. The majority of my experiences have been positive. There’s no time for bs, ambiguity or lies in Trauma ICU. I’ve done everything but transplant and I definitely prefer Trauma.
Thanks to the internet, almost all patients everywhere are a lot more educated these days. I know what you mean though, I’m always careful not to contradict anything that’s been said by the provider. Thanks again for your input.
I love that you understand how difficult those forms are. I filled mine out four years ago, and to be completely honest here, I haven’t looked back at them since. They were ambiguous at best, and obscure most places. And the worst part is that there is no where in the forms to write nots and clarifications. (Big sigh).
My oldest daughter is executor of whatever remains when I cross. And I know she would be standing there saying “I don’t know” with huge tears falling everywhere. It is a decision I never want her to have to make. So I filled out the forms.
In the end, it’s easier in her heart to be mad at me for no wanting extraordinary measures than for her to allow me to die.
Thanks Teyani. I appreciate your perspective as both a mother and a healthcare provider. I felt the same way and this was why I chose someone else to be my healthcare proxy. Also my sister leans on the anxious side of life and felt she would have a very difficult time processing the decisions she would maybe have to make for our parents.
Completing these forms is a beautiful gift for your daughter.
Happy Anniversary to your mom & dad! Thank you for continuing to help us understand the vital importance of medical advance directives. Great article, Kristin. I really like how you set up the writing in this article, from the details of a nurse in training to the conclusion on advance directives.
Thank you, Kristin. Vivid is the perfect word. The opening details like the stethoscopes and the pens set up the imagery and the action, the point where that moment happens of learning to ask a lot of questions, and that is a great writerly invitation to keep reading.
I'm relieved that my Dad passed away at home in January of 2020, before Covid really took hold. have huge empathy for families in Covid. You know all about those traumatic times.
This paragraph highlights what many don't know:
"Like why would someone want a short term feeding tube or a blood transfusion if they had little hope for a meaningful recovery? Well, blood transfusions can be life-saving, but often they are given to alleviate uncomfortable symptoms like shortness of breath or fatigue. It is possible to minimize suffering when still dying."
Managing pain, and alleviating the worst symptoms were all things we did for nearly 3-4 years, in and out of the hospital. When someone is stabilised / meets a 'target' often they return home (or to a care facility). There is no specific moment/symptom where we could say Dad shifted from palliative to end of life...it was perhaps a very protracted end of life of 6 months.
I'd be interested to hear your thoughts on this...maybe another article? Have you seen some elderly people rotating a few times through your doors? How is pain managed? Any examples of how Directives are applied in these cases...This 'limbo' crisis state was one long day over months.
Thank you for sharing your experience and advice. Happy Anniversary to your parents!
Thank you . I’m happy to hear dad passed at home, so many patients say that is their dying wish. I’m also glad you pointed out there’s no specific moment. I find this to be true and always say if you’re waiting for a big sign that’s it’s time, it’s probably not going to come.
Thanks Kristin, yeeeaaahh we were really happy to be able to fulfil Dad's wish but GEEZZZZ I'll write more about those last months at some point!
Thanks, yes absolutely there's no big sign and no one WANTS to say he has a week or more before passing etc because there is NO way anyone can tell...what seemed like a week WAS months for us....AND like it is for many - dad was not bed bound but could 'go through the motions' with a blue-lighting event nearly every week.
SO, that's why I will keep pushing for everyone (regardless of health status) to share their wishes and Advanced Directive with loved ones. Thanks for sharing your perspective and wisdom.
Such an important topic. My Mom ended up with alzheimers and I had to make an awful lot of decisions. I do wish we had talked more about wht she would have wanted.
I am sorry you went through this with your mom. I hear so many people say they wish they talked more about it. It’s hard, no one likes to usually even think about death. Even me sometimes and I’m very used to the concept. Thanks so much for sharing. 🩷
Thanks Kristin, for making the point about respecting patient’s wishes. My father spent 10 years in a nursing home with dementia. I remember the conversation about signing the directive, he was still in denial about having the disease, so l asked him if he wanted the government or me to make decisions when he couldn’t, so he signed. 🤣My partner died at home from MND, l thank whatever ‘powers’ had him be able to have his mental faculties despite the fucking horror of watching someone become a prisoner in their own bodies. At one stage l remember a local GP telling me he might have to go to hospital. Thank god for his palliative nurse who on a visit told me that they can’t force him to go to hospital against his wishes and that palliative nurses look to the people who are caring for them. She is an angel and she empowered me to care for him, both emotionally and practically, at home, otherwise the system would not have respected his wishes. So, hooray the system needs warriors like you … angels without wings is what you are. I developed a friendship with Catherine and still see her. I am forever grateful for the care and connection she made with John and l. My mother was also fortunate enough to die at home, her wishes weren’t respected. She wanted to die at home and the hospital didn’t want to release her. It took me a week to get her out of the hospital (she had been in for 3), she made it home for the weekend and died in the Monday night while l was holding her hand, as she wanted! The palliative nurse who came to our house once a week while John was ill told me they wouldn’t have wanted Mum home because of the ‘bother’ of doing all the paper work etc when they knew she was about to die. So, the Australian health care system is flawed too. Thank you for your engaging writing about such important topics and for your down to earth approach … and clearly, the care you give to your job. And thank you for hanging in there.
Hi Simone, thank you for sharing this with me and the rest of the readers. I struggle with writing sometimes, I don’t want to upset people, just want people to have a better idea of what happens when sort of trapped in the system. Sometimes people want to die at the hospital, and that’s always an honor for us too.
I’m so sorry to hear your experiences went the way they did. It’s heartbreaking and I’ve been on all sides of the equation. In the US there is something called a POLST order that can be very helpful. Basically it’s a directive for home and nursing home use that says what the patients wishes are, if they even want to go to the hospital at all. Sometimes family members feel scared and come to the hospital. It’s tough all around. Thank you so much for your kind words. It makes me sleep a little easier knowing my intended message reached you, so thank you for that ❤️
Thanks Kristin, l share your struggle about not wanting to upset readers, in and around experiences of grief etc. Aus has what we call an ‘advanced care plan’, which frankly isn’t worth the paper it is written on unless there is a family member who is watching, and even then, it can sometimes be impossible to combat them, simply because you need know,edge to question. Long story short, my mother split her eye, right around. They had taken her pupil out and wanted to sew her eye under local because she couldn’t have a general. I was in hospital with her arguing with the surgeon. 10 minutes after l left the hospital, they rang to say she was going under a medical emergency procedure. It was the first time they had sewed an eyeball back like that in any patient under local. She ended up losing the eye anyway. When I recent,y asked my GP, that perhaps they did it as an experiment, she said probably. Anyway, sorry about my rant. I won’t start about one of the nursing homes my father was in! So, l really do understand what nurses have to endure in maintaining care and dignity for their patients and what you can be up against. Thank you too, for your kind thoughts and message. 🙏
“A hard 50” 😂could be taken so many ways
Ha! Probably the first unintended pun of my entire publication! 😭
Thank you Kristin. This gets to the heart of one of a nurses most important duties, presenting factual information to people in crises. I began my nursing career in 1984 and worked 28 years in ICU. There’s been a lot of changes in that time. One of the most important is the autonomy given to nurses to make decisions based on a clients best interest. When I started, many physicians would use their perceived power to just plain lie to patients and family about their condition and prognosis, leaving it to the nurse to present the truth without seeming to contradict the Dr. It was a tricky skill to master. These physicians weren’t very popular among ICU nurses. Over the years, the growing autonomy of nurses helped lead to the “education” of many new critical care physicians. People want and deserve the dignity and respect to know the truth as accurately as we can present it.
Hi Frank.. thank you so much for commenting. I definitely look forward to hearing more of your perspective! I can only imagine all that you’ve seen and experienced in those days. The majority of my experiences have been positive. There’s no time for bs, ambiguity or lies in Trauma ICU. I’ve done everything but transplant and I definitely prefer Trauma.
Thanks to the internet, almost all patients everywhere are a lot more educated these days. I know what you mean though, I’m always careful not to contradict anything that’s been said by the provider. Thanks again for your input.
I love that you understand how difficult those forms are. I filled mine out four years ago, and to be completely honest here, I haven’t looked back at them since. They were ambiguous at best, and obscure most places. And the worst part is that there is no where in the forms to write nots and clarifications. (Big sigh).
My oldest daughter is executor of whatever remains when I cross. And I know she would be standing there saying “I don’t know” with huge tears falling everywhere. It is a decision I never want her to have to make. So I filled out the forms.
In the end, it’s easier in her heart to be mad at me for no wanting extraordinary measures than for her to allow me to die.
Thanks Teyani. I appreciate your perspective as both a mother and a healthcare provider. I felt the same way and this was why I chose someone else to be my healthcare proxy. Also my sister leans on the anxious side of life and felt she would have a very difficult time processing the decisions she would maybe have to make for our parents.
Completing these forms is a beautiful gift for your daughter.
Happy Anniversary to your mom & dad! Thank you for continuing to help us understand the vital importance of medical advance directives. Great article, Kristin. I really like how you set up the writing in this article, from the details of a nurse in training to the conclusion on advance directives.
Thanks Heidi. Of course a million things happened between those two points but I vividly recall the moment I learned to ask a lot of questions.
Thank you, Kristin. Vivid is the perfect word. The opening details like the stethoscopes and the pens set up the imagery and the action, the point where that moment happens of learning to ask a lot of questions, and that is a great writerly invitation to keep reading.
Thanks for writing this Kristin!
I'm relieved that my Dad passed away at home in January of 2020, before Covid really took hold. have huge empathy for families in Covid. You know all about those traumatic times.
This paragraph highlights what many don't know:
"Like why would someone want a short term feeding tube or a blood transfusion if they had little hope for a meaningful recovery? Well, blood transfusions can be life-saving, but often they are given to alleviate uncomfortable symptoms like shortness of breath or fatigue. It is possible to minimize suffering when still dying."
Managing pain, and alleviating the worst symptoms were all things we did for nearly 3-4 years, in and out of the hospital. When someone is stabilised / meets a 'target' often they return home (or to a care facility). There is no specific moment/symptom where we could say Dad shifted from palliative to end of life...it was perhaps a very protracted end of life of 6 months.
I'd be interested to hear your thoughts on this...maybe another article? Have you seen some elderly people rotating a few times through your doors? How is pain managed? Any examples of how Directives are applied in these cases...This 'limbo' crisis state was one long day over months.
Thank you for sharing your experience and advice. Happy Anniversary to your parents!
Thank you . I’m happy to hear dad passed at home, so many patients say that is their dying wish. I’m also glad you pointed out there’s no specific moment. I find this to be true and always say if you’re waiting for a big sign that’s it’s time, it’s probably not going to come.
Thanks Kristin, yeeeaaahh we were really happy to be able to fulfil Dad's wish but GEEZZZZ I'll write more about those last months at some point!
Thanks, yes absolutely there's no big sign and no one WANTS to say he has a week or more before passing etc because there is NO way anyone can tell...what seemed like a week WAS months for us....AND like it is for many - dad was not bed bound but could 'go through the motions' with a blue-lighting event nearly every week.
SO, that's why I will keep pushing for everyone (regardless of health status) to share their wishes and Advanced Directive with loved ones. Thanks for sharing your perspective and wisdom.