Tag: Advance health care directive

Engage With Grace And Please Pass the Cranberry Sauce…

I keep asking myself, “What would the Pilgrims do? Would they have mixed Living Will conversations with their Thanksgiving dinners? And what about the American Indians who were there? Wouldn’t they have thought this was strange?”

Nevertheless, I do think having end-of-life discussions with our loved ones is important, so this year I’m participating in the Engage With Grace blog rally (see below).

Engage with Grace this Thanksgiving
Posted By Alexandra Drane On November 21, 2012

By Alexandra Drane

Once again we’re hosting the annual Engage with Grace blogrally. Engage with Grace aims to get people talking about their wishes for end of life and advanced care. If you want to host this on your blog please do.
One of our favorite things we ever heard Steve Jobs say is … “If you live each day as if it was your last, someday you’ll most certainly be right.” We love it for three reasons: 1) It reminds all of us that living with intention is one of the most important things we can do. 2) It reminds all of us that one day will be our last. 3) It’s a great example of how Steve Jobs just made most things (even things about death – even things he was quoting) sound better.

Most of us do pretty well with the living with intention part – but the dying thing? Not so much. And maybe that doesn’t bother us so much as individuals because heck, we’re not going to die anyway!! That’s one of those things that happens to other people …

Then one day it does – happen to someone else. But it’s someone that we love. And everything about our perspective on end of life changes.

If you haven’t personally had the experience of seeing or helping a loved one navigate the incredible complexities of terminal illness, then just ask someone who has. Chances are nearly 3 out of 4 of those stories will be bad ones – involving actions and decisions that were at odds with that person’s values. And the worst part about it? Most of this mess is unintentional – no one is deliberately trying to make anyone else suffer – it’s just that few of us are taking the time to figure out our own preferences for what we’d like when our time is near, making sure those preferences are known, and appointing someone to advocate on our behalf.

Goodness, you might be wondering, just what are we getting at and why are we keeping you from stretching out on the couch preparing your belly for onslaught?

Thanksgiving is a time for gathering, for communing, and for thinking hard together with friends and family about the things that matter. Here’s the crazy thing – in the wake of one of the most intense political seasons in recent history, one of the safest topics to debate around the table this year might just be that one last taboo: end of life planning. And you know what? It’s also one of the most important.

Here’s one debate nobody wants to have – deciding on behalf of a loved one how to handle tough decisions at the end of their life. And there is no greater gift you can give your loved ones than saving them from that agony. So let’s take that off the table right now, this weekend. Know what you want at the end of your life; know the preferences of your loved ones. Print out this one slide with just these five questions on it.

Have the conversation with your family. Now. Not a year from now, not when you or a loved one are diagnosed with something, not at the bedside of a mother or a father or a sibling or a life-long partner…but NOW. Have it this Thanksgiving when you are gathered together as a family, with your loved ones. Why? Because now is when it matters. This is the conversation to have when you don’t need to have it. And, believe it or not, when it’s a hypothetical conversation – you might even find it fascinating. We find sharing almost everything else about ourselves fascinating – why not this, too? And then, one day, when the real stuff happens? You’ll be ready.

Doing end of life better is important for all of us. And the good news is that for all the squeamishness we think people have around this issue, the tide is changing, and more and more people are realizing that as a country dedicated to living with great intention – we need to apply that same sense of purpose and honor to how we die.

One day, Rosa Parks refused to move her seat on a bus in Montgomery County, Alabama.  Others had before. Why was this day different? Because her story tapped into a million other stories that together sparked a revolution that changed the course of history.

Each of us has a story – it has a beginning, a middle, and an end. We work so hard to design a beautiful life – spend the time to design a beautiful end, too. Know the answers to just these five questions for yourself, and for your loved ones. Commit to advocating for each other. Then pass it on. Let’s start a revolution.

Engage with Grace.

Alexandra Drane is the Founder of Engage with Grace.

Article taken from The Health Care Blog – http://thehealthcareblog.com
URL to article: http://thehealthcareblog.com/blog/2012/11/21/engage-with-grace-this-thanksgiving/

April Fool

April 16th is the fifth annual National Healthcare Decisions Day (NHDD). According to their website, the mission of NHDD is “to inspire, educate & empower the public & providers about the importance of advance care planning. National Healthcare Decisions Day is an initiative to encourage patients to express their wishes regarding healthcare and for providers and facilities to respect those wishes, whatever they may be.” Nathan Kottkamp, a lawyer who specializes in health care law is the founder and chair of NHDD. In an interview on AARP News, Mr. Kottkamp reports that he launched NHDD in Virginia in 2006 and expanded it nationally in 2008. He chose April 16th, the day after “tax day” because of Ben Franklin’s aphorism “Nothing can be said to be certain except death and taxes.”

Advance medical directives including living wills and health care proxy/agent/power of attorney (who a person wants to make health care decisions for them in case they are incapacitated), are important legal documents recognized (in differing degrees) in all 50 states. At least in theory, having an advance medical directive helps patients have more say in how they die—whether, like the emergency department physician Boris Veysman they want “Shock me, tube me, line me” (Health Affairs, Feb 2010, vol 29(2): 324-326), or like other people they do not want medical procedures that artificially prolong the dying process. And designating a health care proxy—again in theory—helps to avoid unnecessary confusion in health care communication, especially in emergency situations.

I applaud the work of Nathan Kottkamp and others like him to bring greater awareness to the general public about end of life decision making. But as I am currently experiencing, the health care system is not cooperating with sane implementation of the Advance Medical Directives.

Five blocks northeast of Nathan Kottkamp’s law office in Richmond, Virginia is the main hospital of the Virginia Commonwealth University (VCU) health System. My elderly father is now a patient there, after experiencing confusion and shortness of breath at home (from congestive heart failure) and calling the ambulance to take him to see his cardiologist at VCU. Less than two years ago I was with my father in the VCU hospital admission’s office when he was being admitted for possible cardiac surgery. My father had the original copy of his Virginia Advance Medical Directive/Living Will/Appointment of Health Care Agent. My father and I had gone over specific medical procedures—such as resuscitation, mechanical ventilation, and ‘tube’ feeding—with his wonderfully patient and competent primary care physician (who praised my father for having this important conversation and for doing his Living Will).  My father came to VCU hospital fully prepared. His Medical Directive five page document was witnessed/signed by two of the VCU Health Systems hospital admission’s office officials. They made photocopies to give to me and promised the legal document was now part of my father’s hospital medical record. My father named me as his health care agent.

Imagine my surprise yesterday when I was notified by my father’s neighbor that my father had been whisked away to VCU emergency department. But I was even more surprised when I called/talked with a clerk at the VCU ED and was told that to protect patient privacy the nurses/medical staff couldn’t tell me anything about my father—that she wasn’t even supposed to tell me if he was there or not. It did no good when I informed her I was his health care proxy—she said they had no proof of that. He was admitted to the cardiac floor and I was finally able to talk with his nurse (using a special secret HIPAA/patient privacy code—really? The lawyers interpreting HIPAA for hospitals are getting quite creative). She informed me that they had no record of my father’s Medical Directive so he was “full code.” When I told her I had a photocopy of the Medical Directive in front of me and that it was signed by their hospital admission’s department personnel she said, “That doesn’t matter. We get rid of all of that in the medical record and start all over again.” She said that my father should have brought a copy of his Medical Directive to the hospital with him—it was his fault he didn’t have it. I kept expecting her to exclaim “April Fools!” but she didn’t.

So, on April Fools’ Day, I’d like to amend Ben Franklin’s aphorism to proclaim: In this world there is nothing certain except death and taxes and the fact that our US health care system is one crazy-making system…..

(If you haven’t seen/read Atul Gawande’s terrific New Yorker Essay 8-2-10 on end of life decision making ,“Letting Go, What Should Medicine Do When It Can’t Save Your Life?” I highly recommend it. Also see the recent NYT Op-ed piece 3-30-12 “Taking Responsibility for Death” by Susan Jacoby).