Sunday, December 30, 2012

'Twas the Day Before Christmas...

...and all through the hospital there were patients and families struggling with advanced illness despite the season. (Am I the only person who takes offense when hospital units are strung with wreaths and blinking lights, and orderlies wear Santa hats? Holiday cheer at the nurses' station seems a jarring, and potentially painful, contrast to what is happening inside patients' rooms.) We met with three patients and their families on Christmas Eve day, each with its own flavor, rhythm, and backstory.

Pedro was only in his early 40s, dying of advanced liver disease. When the liver goes, often the kidneys quit, too. We call that "hepatorenal syndrome," and dialysis -- what you'd normally think of when kidney fail -- is ineffective in this circumstance. The liver and kidney experts were tinkering around the edges, giving drugs and fluids in various combinations. But the blood tests were getting worse every day.

When I sat down with Pedro, I told him there was at best a 50-50 chance he'd live for another three months. He told me that he wasn't ready to die. His father had died two years ago -- ironically from kidney failure -- and Pedro and his two brothers were worried about their mom, who was clearly beside herself with grief. I explained why dialysis wouldn't help, why the medications weren't working, and that time was very, very short. We talked about his "code status" -- would he want us to attempt to bring him back if his heart stopped? -- and he was clear that the answer was yes. He did follow our advice and signed a form naming his brother Juan as his medical power of attorney.

Next door to Pablo was Bernie, a fellow in his late 60s who'd lost his independence as multiple episodes of pneumonia sapped his strength. Those, in turn, were probably caused by his difficulty with swallowing leading to aspiration. And all of that was set on the background of longstanding lung disease from a lifetime of smoking. Bernie had already made clear to me that he wanted nothing to do with resuscitation attempts. So our family meeting -- which included his sister and his ex-wife, with whom he'd maintained a cordial relationship -- focused on what was achievable and what the road ahead might look like. Bernie desperately wanted to return home, even if he would have to accept some help there. We talked about the possibility of that happening and how it would be hard to avoid at least a short-term nursing home stay with some rehab. His sister asked me to estimate how likely it would be for Bernie to get what he wanted, and I had to tell her he was facing long odds.

From there we moved on to the ICU to meet with Paula and her family. Paula couldn't participate in our discussions. A woman in her early 70s, she'd had metastatic breast cancer diagnosed a year before. Nothing worked, and she was in the ICU on a ventilator and sedation because she'd had overwhelming sepsis and two cardiac arrests in which the doctors and nurses were able to get her heart started again. "That's what's on her advance directive," one of them told me. The form she'd completed had two choices -- essentially, "let me go" and "keep me going even if I have to spend years on machines" -- and there was writing alongside the second choice.  I took a closer look. She'd placed her initials in the margin next to the "do everything" choice and written "NO" in capital letters in the space where her initials were supposed to be. She'd filled the form out backwards, or so it seemed. Her husband, sons, and daughter all confirmed that "this has gone on too long" and "she never wanted this." They were worried about her struggling for air if she came off the ventilator, so I walked them through our process for assuring that patients don't gasp or feel like they are choking. They seemed relieved but asked for more time to think things over.

So how did things turn out for my three Christmas Eve day patients? Christmas was on a Tuesday this year. By Friday Pedro had told everyone that he was at peace with dying. He agreed to permit a natural death and, trying to comfort his mother at the same time, moved to the inpatient hospice unit. Bernie was discharged from the hospital that same Friday to a nursing home, telling us he never wanted to come back to the hospital, that he knew that time was short, and that he realized he might never get home. And all of Paula's out-of-town relatives had arrived by Thursday evening. They said their good-byes, the ventilator was discontinued, and ten minutes later she was gone.

So three families struggled with hard choices on the day before Christmas, and ultimately each made the decision that was right for them. They faced reality. But the day before Christmas had a surreal touch, too, or so it seemed to me. A local funeral home placed this advertisement in the December 24th newspaper. I quote it exactly below with the original capitalizations and punctuations -- and no, I am not making this up:

Now through December 31, 2012, receive a free metal Casket with burial pre-arrangements or a Free Urn with cremation pre-arrangements. Happy Holidays!

I hope my readers' holidays were happy even without those free gifts, and may 2013 be filled with joy and peace for you and for all who suffer, no matter what the cause.

8 comments:

  1. I agree with you about Christmas decorations.

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  2. My father in law passed away on 12/30/12 in hospice due to hepatorenal syndrome. A diagnosis of HCC after thanksgiving and a month later he is gone. He is lready missed, but his hospice stay has roused something in me. A desire to be a part of such a sacred calling. I have devoured the blog over the last couple of evenings. Now I wish to figure out how I can get involved. Your posts are thought provoking and moving. Please continue to share your gift of writing and your compassion.

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    1. Every hospice is required to have volunteers. After some time has passed, you might consider doing that as a way to "pay it forward." I appreciate your kind comments about the Hospice Doctor blog.

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  3. My mother has lung cancer that has moved to her brain.
    She's been giving 3 months. Sent home with hospice. I live 6 hours away and must make a decission when to go.
    She is in-mobile. Can not walk on her on. Her colon and ruptured a few weeks ago. She is confused todday. Eating very little and conversation is very limited.

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    1. At the risk of being presumptuous, may I offer some advice? Go now. If you wait too long, you may miss the chance to say good-bye. Three months may be a generous estimate.

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  4. Thank you.
    I was there a couple of weeks ago. Her colon rupture and burst. No cancer there. Seems like its been down hill from there.

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  5. Hi,

    I have a quick question about your blog, do you think you could e-mail me?

    Heather

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    1. I'd have to have an e-mail address, of course. It might be easier if you followed @hospice_doctor on Twitter and sent a direct message.

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