What a doctor wishes patients knew about the end

[left-of-center2012]

(BJ Miller, M.D. is a hospice & palliative medicine physician who sees patients and families at the UCSF Helen Diller Family Comprehensive Cancer Center. He is the co- author of "A Beginner's Guide to the End: Practical Advice for Living Life and Facing Death.)

As a hospice and palliative medicine physician, my job is to help reduce suffering. At the end of life, that job becomes especially intense when time is short, when machines and data seem to be taking over, and so many intense emotions surround a body that is trying to die. In the spirit of palliation, here are a few things, as a physician, I wish I could share more often with patients and their caregivers.

You don't need to be dying to receive palliative care

Palliative care is an approach, framed within the context of serious illness, where easing suffering is the goal. So, you just need to be sick and suffering to qualify for palliative care, not necessarily dying any time soon. Don't be afraid to say you want it.

Don't wait for your doctor to bring up hospice

In an effort to get primary physicians to think sooner about recommending hospice, researchers came up with the "surprise question." As in: "Doctor, would you be surprised if your patient died within a year?" If the answer is no, then that doctor should start considering a referral to hospice. But there is nothing stopping you from asking the surprise question yourself. If you live with advancing chronic illness and are thinking about how you want your life to go, you might turn the table and ask: "Hey doc, would you be surprised if I died in the next year?" This is a good and bold way to open an honest dialogue with your doctor and get the sort of support you need.

To the caregivers: Don't be afraid to leave the room

How many times will they have spent hours gathered in the room, not eating or sleeping for days, barely blinking, not wanting to miss that last breath, only to have the person die just when they nod off or use the bathroom?
As any hospice worker can tell you, this is also a well-known phenomenon. It's almost as if the presence of others -- especially deeply loved ones -- gets in the way of the dying person's final step. That big moment may need to happen alone. What dying people seem to need at the very end is to know that the people they love are going to be OK; that life will go on and that you -- the person they care for -- will be able to take care of yourself. So, the kindest thing you can do is to demonstrate that care by leaving the room when you need to. Just be sure to give a kiss and know that it may have to be the last.

https://www.cnn.com/2019/07/18/opinions/doctor-advice-facing-death-miller/index.html

[Siwsan]

1. My experience with "To the caregivers: Don't be afraid to leave the room"

When my Dad was in Hospice, my sister, mom and I pretty much camped out in his room. Sometimes just 2 of us, but never just one. Until August 20, 1999. My sister went to be with her kids and my mother went to her house to get some rest. That left just me with Dad.

Dad was my rock. He was the parent who always encouraged and supported me. He was the one who loved me unconditionally. When something bad or unfortunate happened, he was the one who comforted, rather than blamed.

So, I was sitting with him, touching his hand and watching him breathe. I knew the end was very close so I opened the window and suggested he go out and take a look at what a beautiful day it was. There was a pond with lots of beautiful birds, and he loved birds. A few minutes later, he died. I believe, to the core of my soul that he waited until it was just the two of us, to leave.

A few days later I was out walking and a beautiful plume feather floated down right in front of me. I looked up and didn't see any birds, but absolutely felt the presence of my beloved Dad.

[Farmer-Rick]

2. Well, hospice insisted my spouse come off dialysis

Before they would help us. If she were taken off dialysis, she would have been dead in 3 days. She had NO kidney function.

As it was, she made it to her next birthday without their help. I can not recommend them because of their silly little bureaucratic rules.

But my mother and father seemed to find their involvement of some value.

[left-of-center2012]

3. "their silly little bureaucratic rules"

Yes, hospice has rules and regulations.

I saw this just now online:
"Many kidney-failure patients must halt dialysis to receive hospice care"

As they approach the end of their lives, many patients with end-stage renal disease face a harrowing choice: Continue dialysis treatment or enter hospice care. Medicare currently will not pay simultaneously for dialysis and hospice care for patients with a terminal diagnosis of renal failure. Patients who want hospice care usually must first halt the dialysis treatments that keep them alive.

Medicare's requirement to halt dialysis before hospice leads some patients to forgo hospice entirely.

Full article at:

https://newsroom.uw.edu/news/many-kidney-failure-patients-must-halt-dialysis-receive-hospice-care

[Farmer-Rick]

4. Yup our family had to face this harrowing choice

We chose to give her another year of life while staying on dialysis without hospice. Instead of 3 days of life off of dialysis with hospice. Who would NOT make that choice? 3 days of life or 1 year?

I have very good health insurance and we could have covered hospice costs without going through Medicare. But hospice would NOT allow it.

It was a hospice beuacratic rule not just a Medicare rule tied up with the price of life.

I hate the medical community. They are so tied up with prices and profit and what their bottom line is. They lose focus of the humans involved and end up frequently causing more pain and suffering.

[orleans]

5. when we decided to bring my mom home

for hospice they told me it would be a little over a week before they would be able to have to medical bed delivered. (she never made it home--she died a day later or that day.) it's been nearly ten years and my memory isn't that good on things pertaining to what we went through at that time.

my point is--it was going to take well over three days to be able to bring my mom home. i agree that hospice rule you're talking about is totally fucked up

[susanna]

6. I was my sister's POA and the only one who was near her 24/7 as she entered her final days.

I was camped out at a nearby hotel room. Was grateful to have the resources to do so at that time.

The people at the hospital found me odd. I would show up early in the morning to talk to the doctors/hospice, leave mid-afternoon, come back for dinner, go back to my hotel...then show back up at 2:00am to sleep with her for a few hours. I told the hospice workers at the hospital that if she wanted to let go when I was not there, I was making damn sure that she could; that she alone would make her decisions, even comatose. I told them that my sis had her own mind, and I would trust it.

I wondered myself how it would all end up. She was quite angry with me towards the end because I couldn't make corporate medicine try to save her.

The night before she died, my husband and I read Winnie the Pooh to her (her favorite childhood story). I played her her favorite music. My husband and I left at 3am to go back to the hotel, knowing the end was near, wanting to give her some space. Came back at 7:15am. She was still alive.

We (hospice nurses/doctors, my husband and I) were talking about children who made it through when their only parent died, and how some did quite well, despite their immense pain. Shortly after that conversation, I looked over and saw that my sister had stopped breathing.

She was pronounced dead 10 minutes later. But she really left when we discussed how her boy might just live decently, and with hope, even beyond her.

Bottom line: she waited until she felt her son had a chance. That is all she ever cared about. It was incidental that she allowed me to be there, but that was her way. And I am grateful nonetheless.

I miss my Silver Girl like fire. Four years this December (Winter Solstice). I will never forget.