Advance planning for the end of life: My answer to healing

Tory Zellick's story:

When we were much closer to the end of my mother's life, unbeknownst to us, she developed hypercalcemia [raised calcium level in the blood].  I was 24 at the time, and had already been her care partner for six years.  We'd started butting heads, as mothers and daughters do.  

Because of her shift in awareness, we started searching for a brain tumor.  Nothing was found to explain the change in her cognitive function.  To restore family balance, Dad whisked Mom away for a one one vacation.  While on the trip to Mexico, she got a urinary tract infection.  The kidney and liver can only process so much, so the calcium built up even more in her blood.  Her hallucinations continued.

We went to the Emergency Room of our hospital in Chico, California.  When admitted through the Emergency Room, you tend to deal with a hospitalist, not a physician who is familiar with one's illness/ailment.  We called her oncologist, who turned out to be out of town for the week.  But because we'd had the conversations with my mother, we knew she did NOT want cardiopulmonary resuscitation or a feeding tube.  We'd had the talk about the durable power of attorney.  She'd explained everything that she did and didn't want.  We'd contacted the lawyer, and had Do Not Resuscitate (DNR) and Do Not Intubate (DNI) orders already written.  We had a full understanding of what she felt was a good quality of life.  

As it became clear that end of life decisions needed to be made, we felt comfortable that we were fully prepared as a family.  We had what I call our "care team":  physicians, insurance broker, attorney, etc.  Being organized allowed me to have the information I needed at my fingertips to make appropriate decisions, and call the correct people when I needed certain questions answered, tests run, or scans compared.  

After comparing scans of Mom's liver over the past six-week period, it was apparent that the cancer had metastasized to her soft tissue, and that the hypercalcemia would be a quick and painless way for her to exit this life.  Quality of life was something she valued much more than time itself.   As a family, we decided to take her home and allow her to pass in the home she had raised her children in, as she had requested when we had the discussions about end-of-life when she was relatively healthy. 

This kind of situation can be overwhelming.  Your incredible, functioning brain will quickly begin to misfire.  But if you have everything organized, have had the difficult conversations about end-of-life and have the appropriate documents in order, it's much easier to make the decision best suited to the patient.

Years earlier, we'd been able to have the conversations about the end of life because my grandfather had been grappling with renal cancer for as long as I could remember.  My other grandfather had died when I was five, so we'd always talked openly about death. 

We weren't raised in any Western religion, but those who have some spirituality should contact their reverend, priest, etc., if they're looking for a guide to have such conversations.  We looked deep in ourselves to know what to do.  We sat in the living room, and discussed each of our wishes.  Our parents presented it to us that we should all know what everyone's wishes were.  An 18-year-old could get into a car accident and suffer a traumatic brain injury; this talk wasn't just for the oldest or sickest person in the family.  By incorporating the whole family and not just one ill individual, it helps by not isolating the patient about their own personal mortality.  It's not pointing the finger at any one person; it's something that everyone should do.

After my mother passed away, I created a workbook full of helpful tips and worksheets to help any caregiver avoid any unnecessary suffering.  It's my answer to healing, to help other people.  Either way, this journey will define you, when you're faced with a disease like this.

Tory's book, The Medical Day Planner: The Guide to Help Navigate the Medical Maze, provides insight and guidance to patients and their families and caregivers.  It's available at Barnes and Noble and Amazon.com.  Check out her website:  AllThingsCaregiver, and read another caregiver's story.

Thanks to Claudia Schou of Media Boutique for connecting us.

Her husband wasn't ready: Discussions about the end of life

Dr. Jeffrey Schnipper's story:

I see people die in horrible ways. It doesn't need to be that way! In 2011, it takes a lot of work to have a good death. The default is to not have one.

A few years ago, an elderly woman with a bad case of dementia came to our hospital for a cardiac problem. She couldn't verbalize what she wanted regarding her healthcare wishes. Her husband was not ready to let her go. He was her healthcare proxy. He and I met probably for an hour, every day, for a week. We went through the stages of grief together. By the end, he was willing to let her go.

She had a good death.

As a hospitalist, I view these discussions as a really important part of my job; so do other hospitalists. I sometimes get the chance to get the whole family together for long periods of time, which primary care providers can rarely do.

Residents tend to be very concrete about these discussions, asking, "Do you want chest compressions? Pressors? Dialysis?" And so forth. But that's not what the discussions should really be about. It should be more like, "Is your goal to get a cure? To get relief of symptoms? To be as functional as possible? To be kept alive at all costs? Would you like to die at home? What’s important to you? If you were no longer able to do [fill in the blank], would you want to be kept alive?"

Dr. Schnipper's advice: The earlier you can have these discussions, the better, so you'll have a reservoir to draw from. First, talk with your healthcare proxy, after you've chosen one, then with your primary care provider. Then, there are forms to fill out, living wills, healthcare proxies, and so on, as appropriate for the state you live in.

Read my father's end of life story.

Thanks to Dr. Schnipper for our interview of March 16.

I insisted that a doctor see her again: The effects of dehydration

Myra Fournier's story:

My mom went through a rather "interesting" few days.

She was in the hospital overnight on Thursday for transient ischemic attack (TIA) symptoms, discharged on Friday, and doing VERY well Saturday morning.

At 4:00 on Sat, Guy called me to say that he and the aide can't really rouse her. They were all set to go out after lunch, and then just got weak, couldn't walk, and had to be carried to bed. The nurse checked her out and vitals were fine. She slept all afternoon, but by 4:00 they got more concerned. By the time I got over there around 5 pm, she had a severe headache, slurred speech, and a weak left side.

We called an ambulance and when she got to the ER, I suggested they start an IV of fluids. They disagreed. Instead they did a CAT scan and an EKG. Both normal. They gave her a Tylenol for her headache, which did nothing. By 10 pm she was screaming in pain, confused, and agitated and they gave her a shot of morphine. By the time the needle left her arm, she was sound asleep and peaceful. She was admitted to a room after midnight and had a pretty good sleep. I once again suggested an IV of fluids, but the nurse did not think that mom was dehydrated.

On Sunday they did an MRA (as opposed to an MRI) and an EEG (I think) and both were negative for stroke and seizure. They did labs and ruled out infection. They decided to cut back on her blood pressure meds because her blood pressure was also low.

I went home on Sunday around noon while Guy stayed for the afternoon and we had a private aide for overnight. On Monday morning, the aide reported that mom had a terrible night, did not sleep, and the headache was back. When I got there around 10:30, her speech was slurred and she was listing over to the left. A hospitalist came and decided to order an IV of fluids. I waited with her all afternoon, and she fell sound asleep - so deeply that once again she could not be roused: not by yelling at her, rubbing her arm, or pounding on her chest. However, the IV never came and the nurses and PT just thought she was having a "sleepy" day. Ridiculous.

By 5:00 pm I INSISTED that a doctor see her again and that the IV be started immediately. They started the drip at 5:30 and at 5:40 her eyes fluttered open and she started to revive. They ran the drip all night long - I slept over again - and by this morning she was bright, perky, and not (TOO) confused. Speech and strength on both sides were normal. Headache gone. She walked with her walker and held court with the various staff members!

I took her home at 2:30 and when I left at 4:00, she was busy making dinner plans with friends for THIS EVENING and trying to decide on what kind of little celebration she should have for her upcoming birthday. I asked her if she wanted to nap and she was not a bit sleepy.

I was REALLY stunned that dehydration (plus, low blood pressure probably) could cause these kind of severe complications. I hope she was frightened enough to keep to a healthy eating and drinking regimen. I instituted around-the-clock care again until at least the weekend to get her back on her feet (literally).

Advice to patient advocates: Stay on guard about the indirect effects of dehydration on elderly patients.

Read another story about dehydration. Thanks to patient advocate Myra Fournier for the story.