Quality of palliative care

[shootingstar]

My father was moved to the palliative care unit in one of the large downtown Toronto teaching hospitals about 5 days ago. "Teaching" means in Canada usually hospital has signed partnership with nearby university and colleges for student internships and on medical/health care research projects that are funded and projects where results often are published in academic journals/for the health care profession. Sometimes it means access to some newer treatments, etc. for patients, depending on the problem.

He there...to die. This is the final stage. By coincidence he is in the same hospital where 1 of my sisters, one of the hospital pharmacists works. We thought he would be somewhere else, but I guess a patient died..and spot opened up.

Since 2 other siblings also work in other hospitals downtown, it's been good in terms of naturally fitting in visits for my father, feeding him (since he can no longer feed himself. Just touching his skin, hurts him now.) in amongst their lunch break and after work.

Another sibling, a doctor, has been my father's health carre advocate. And really, even in the best of hospitals, family or good friends to look out for patient daily, is helpful. (Scares me since I may outlive dearie, etc.). In Toronto, we are as a family, incredibly lucky to have this level of support. And this is Canada's public health care system. My parents are low income. Most likely for any in-home care my mother (if that happens, which it might one day), we have to sell their house...

Here is today's excerpt on good palliative care from a sister (she's busy herself with 3 teenage children and hubby that looks after home base):

Sitting here --Dad is sleeping. Linda said he had a rough morning -- +++ pain. And Agitated. Confused --talking about taking the boat to the other side

RN gave some medication for the agitation so he is sleeping quietly now. Not rouseable so lunch is delayed

I thought I would describe a few things while waiting for him to awaken:

Can't remember if I told you but he finally has a special air Mattress -- continually hear the humming of the motor I think it circulates air to vary the mattress density to avoid further bed ulcers. These type if beds would be ideal for inpatient but ++++ expensive so lucky that he has one

This area is in the older side of the hospital but Dads bed is right next to the window that faces Queen St . Nice to have natural light come into his bedside
There is the continuous buzz of life: streetcars rumble by , hearing the streetcar bell, occasional sirens , and of course the annoyed honking from the car drivers trying to negotiate downtown TO traffic ( even on a weekend like today)

They have some thoughtful things here in Palliative care: a music therapist can on Thurs after lunch She brought in a portable keyboard and played some classical pieces and a few Christmas carols . I think it was more for the benefit of Dads roommate and their family but dad enjoyed it as well She also had guitar with her but didn't play that this time around.
Hope she comes back soon
Numerous volunteers during the day

Fresh flowers are left by the window to give it less sterile institutional appearance
Across from Dads room is the family room / kitchen where family can use to sit or watch TV and there is a full kitchen. Convenient to have quick access to microwave, sink and utensils. Full size fridge to store food for patients. I saw one fellow take out a beer and another time after dinner, someone was discarding a wine bottle

There supposedly is a therapy tub somewhere but I haven't seen it

They managed to give Dad a nice shave on Friday so his old man whiskers are gone.
Each day they change his shirt.
Kinda funny to see him in bright Kelly green shirt( which he has on today) or white and black striped polo shirt -- the bright colours and style make him look almost boyish since his body frame is so small now. ( the backs of the shirt are cut away for ease of dressing but I guess it beats seeing him in a hospital gown ). I thought Mom would be mortified about the shirts but she didn't really complain about that when talking about her visit --She was more focused on how thin he appeared and how little he ate on Fri evening etc

Other things they do here is --often family stay here for long periods of the day and help with meals. The Unit provides a meal tray for the caregiver so they can eat with the patient Nice gesture. I don't partake but I think it is good for other families. Dad's roommate has family and the wife seems to be here all day . she is elderly so it is nice that she has her meal taken care of while she is here and she dines/ eats her meal with her husband

One of the assistants has been so kind She always tries to pull out Dad's tray first because she knows I will feed him and I need to head back to work asap

[Catrin]

((((Shooting Star, Dad, and family))) Sending all of you warm thoughts and prayers in this difficult time.

[Crankin]

Shooting Star, I am thinking of you. My dad was in palliative care at the VA Hospital in La Jolla, CA from July to Sept. 5 when he died. The people who work there are really special. While I didn't see any fresh flowers, they certainly did everything possible to make life as normal as possible. Like your sisters, my brother spent almost every non-working moment there, until both myself and the nurses told him to take a break! They stabilized his meds from the awful rehab place he had been in, he wore his own clothes, and there was also music therapy and a few other things. There was the most beautiful healing garden where DH and i spent about 3 hours outside with him. We also wheeled him down to have lunch in the VA cafeteria and it was clear many of the workers knew him, despite the fact this is a huge VA facility, also a teaching hospital next to UCSD Med School. We joked that after 35 years, he finally got to move to La Jolla... the priciest suburb of San Diego. The social worker in the unit helped my brother take care of everything, something that no one else seemed to be able to do, even Jewish Family Service.
So, despite all of the horrible things that have occured at the Veteran's Administration hospitals, this place definitely had it together. They got my dad a hat from his Air Force Unit Platoon in WW2, which he wore daily. When each person on the unit passed away, everyone stood or sat at attention and saluted as he was wheeled out, and music was played.
I wrote a thank you email to the social worker and got a lovely response. I think all of this shows us that just because it's public health or other free care, it doesn't mean it's bad.

[OakLeaf]

Hugs to you and your family, Shootingstar. Having such a nice facility must help.

just because it's public health or other free care, it doesn't mean it's bad.

... actually what I've been reading lately is that it's the recent proliferation of for-profit hospices that's hurt their collective reputation for quality ....

[Helene2013]

I'm sending your and your family good thoughts for what you are going through.

I know here too they are trying very hard to make it is more human to the patient and the family. It certainly was not like this 30 years ago where my mother-in-law was "dumped" to die of cancer. It was horrible. And we did not know better then.

Thanks for sharing such a personal part of you with all of us.

[rebeccaC]

I hope your father is always surrounded by caring and love during his last stage of life.

People who work in palliative and hospice care have all my respect for the compassionate and emotional support they give to others!!

[shootingstar]

I know here too they are trying very hard to make it is more human to the patient and the family. It certainly was not like this 30 years ago where my mother-in-law was "dumped" to die of cancer. It was horrible. And we did not know better then.

That would have been very difficult, Helene. It's hard enough now.. Keep in mind not every hospital even has palliative care or even care like this in the 21st century.

Thx for kind thoughts of everyone so far. I gave this excerpt here....actually help anyone here...think about far into the future if /when we need to plan better or ask good, pointed questions to service providers/local health care system.

Totally agree Rebecca, that people who dedicate their work in palliative care are most appreciated.

[zoom-zoom]

I'm so very sorry. We just attended my dad's memorial service 2 days ago. He was diagnosed only a few months ago with stage 4 colon cancer that had spread all over (please, ladies, get your colonoscopies. At nearly 70 my dad had never had one and hadn't been to the doctor since having a stroke 7-8 years ago). He went through about a month of chemo that didn't help slow/reduce the cancer, then spent only a couple weeks in hospice at home before passing. They did a great job helping keep him comfortable in his late days. When my grandparents passed a few decades ago I don't recall their late days to be so comfortable. None of them were able to pass at home.

Gentle vibes to your dad. I hope his end of life is as comfortable for him (and those of you who love him) as possible.

[salsabike]

I'm so very sorry. We just attended my dad's memorial service 2 days ago. He was diagnosed only a few months ago with stage 4 colon cancer that had spread all over (please, ladies, get your colonoscopies. At nearly 70 my dad had never had one and hadn't been to the doctor since having a stroke 7-8 years ago). He went through about a month of chemo that didn't help slow/reduce the cancer, then spent only a couple weeks in hospice at home before passing. They did a great job helping keep him comfortable in his late days. When my grandparents passed a few decades ago I don't recall their late days to be so comfortable. None of them were able to pass at home.

Gentle vibes to your dad. I hope his end of life is as comfortable for him (and those of you who love him) as possible.

Oh, zoom-zoom, I'm sorry. That is hard stuff.

Please DO get those colonoscopies. My family has a genetic error that makes us much more likely to get colon cancer, and I must have colonoscopies every two years.

Zoom-zoom and shootingstar, my heartfelt sympathy to you both.

[zoom-zoom]

Oh, zoom-zoom, I'm sorry. That is hard stuff.

Please DO get those colonoscopies. My family has a genetic error that makes us much more likely to get colon cancer, and I must have colonoscopies every two years.

Zoom-zoom and shootingstar, my heartfelt sympathy to you both.

Thanks. We (my siblings and I) learned that my dad's grandma died of colon cancer (one more reason he was a dumb@ss to not regularly go through screenings...especially when it's so preventable/treatable). My dad's years of smoking certainly didn't help matters, but we will likely need to have our first screenings before the usual recommendation of 50. I'm almost 42, so I'm guessing by 45 I'll be advised to start my screenings.

[rebeccaC]

I’m sorry to hear that you have to go through this Kirsten. If I could I’d give both you and shootingstar supportive HUGS anytime either of you wanted/needed them

yes, preventive care ftw......and every person deserves compassion, comfort and dignity at the end of their life's journey

Loved ones leave this life……it hurts

[OakLeaf]

Hugs to you too, Kirsten.

[PamNY]

Hugs to you Shootingstar. I am glad your father has good care, and that you have a sister who sends such detailed information. Nothing makes the loss of a parent easy, but hospice/palliative care is a big help. I will forever be grateful to the people who cared for my parents.

Kirsten, I am sorry for your loss.

I hope both of you are taking care of yourselves, too.

[AppleTree]

Shootingstar and zoom-zoom, thoughts are with you...

[shootingstar]

My father passed away 2 days ago. One of my sisters did see him take his last breath.

Given the rapid decline of him within the last 3 months, dying at home would have not been a good choice nor would we ourselves could help him safely. His skin when even lightly touched, hurt him.

Christmas is going to be rather quiet, though I will spend Christmas with my siblings and mother for the lst time in ...15 years. Living thousands of km. away makes visiting more precious. Normally it's easier to visit my birth family other times of the year, because of their commitments with in-laws, other stuff, etc.