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Leave No Room for Doubt October 6, 2012

Posted by ijwoods in Blog+.
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From the The New York Times, Oct. 6, 2012: “An appeals court panel on Friday ruled that a hospital could remove life support from a terminally ill Queens woman, but now there appears to be some doubt about what the patient, a 28-year-old bank manager with brain cancer, really wants.”

I created the section “Some things you need to be considering” to help non-paid caregivers, entering a caregiving situation, be aware of several key issues they may face caring for someone with a terminal (or potentially terminal) illness.

Taking care of someone in their final days is a great responsibility and an amazing gift as well if you can approach it right. Taking time to consider the various aspects of such caregiving is critical for both the person being cared for and the caregiver. The list of considerations I created comes strictly from what I experienced and so may not be complete for your situation, but there’s enough there to give you a heads up and a good, if not nearly complete overview of what to prepare for. Because of the list’s importance I decided to give each item a separate post to elaborate on the issue and also provide some resources as a springboard for further research.

The first item seems like a simple one: where do you want the caregiving to take place and where would the person like to die? It sounds simple, but it’s not always an easy decision and one that can be influenced by many variables. Not only that, it becomes part of a bigger discussion; one about the law. Before your eyes glaze over and the temptation to click away overtakes you, bear with me because although you may luck out and find you can go through an end of life caregiving situation without hassle, don’t count on it unless you prepare ahead of time. Oh, and that “time” can be any time. It’s not exactly something we control.

I know we can’t prepare for everything. For instance, as I sit here typing, if you ask me where I want to die I’ll say without hesitation, “at home”. But what does that mean? What am I thinking? What am I assuming? I could very easily, especially here on the roads of Las Vegas, get into a fatal car accident and have to go through my last moments of life laying on some filthy street surrounded by strangers gawking at me.

But let’s say I am in a position to die at home, practically how does that look? Well, realistically speaking, there’s no one around to take care of me on a day to day basis. I’d have to go it almost exclusively alone, unless I get hospice care. And from what I’ve seen, there’s a time where I may not be able to do very much; a time when I wouldn’t even have the strength to medicate myself. So the thought of hanging here alone in extreme pain and agony until death doesn’t seem so enchanting.

Considering we have no control over death, or its timing, it’s a good thing to have a plan and to make sure everyone who needs to be involved is on board. There are a several important legal documents that can help overcome just about any possible confusion and horrible consequence: the ”living will”, the “power of attorney for health care” and possibly the “do not resuscitate” document. Be aware that these documents are determined by the state you live in so they may go by other names and the laws governing them will vary, but they all do pretty much the same thing. K and I hired a lawyer who specializes in wills and end-of-life documents in order to make sure we got it right. It wasn’t very expensive and was well worth it.

The power of attorney for health care is extremely important. If you (if you are the one dying), or your loved one, are unable to make health care decisions, a person designated by the Power of Attorney will take on the responsibility of making those decisions, which means you must trust them a whole lot! Decisions will sometimes have to be made under great pressure and emotion. It’s a very special relationship. The person taking on that responsibility has to be strong enough to make decisions that will ensure the comfort and well being of the one being cared for while understanding and respecting their loved one’s wishes. Health care decisions can get contentious and confusing, just like the story in the article I started this post with. The power of attorney will at least make it clear who’s the decision maker when the loved one can no longer make their own.

One thing that is probably not spoken about much is how the person making the decisions can be affected by the role. After their loved one passes away they will still remember the decisions they took and may very well replay them over and over second guessing what they did. If you think you know what guilt is, just try it after your loved one is gone and you’re grieving. It’s not so easy. Which is why it’s also very helpful to have a living will.

The living will,  is used to declare the kind of treatment you want if you end up with a terminal illness and/or enter a vegetative state.  The living will takes away the contentiousness of ambiguity. The living will speaks for you, or your loved one, when they are no longer able to do so. No one has to get into a fight over what they think the person wants. So having this along with the health power of attorney are important steps in ensuring that you or your loved one can go through a smoother end of life process. And considering how emotional and exhasting a caregiving situation can be, anything that makes it smoother is a God send.

What do I mean by “smoother”?  Just read the article from this morning’s NYT, Court Backs a Terminally Ill Woman, but Doubts About Her Wishes Arise.  Or for an even more extreme example consider the Terri Schiavo case. The battle over interpreting Mrs. Schiavo’s wishes went on for 12 years while she lay there in a vegetative state.  It was so over the top that even the President of the United States felt compelled to get involved! Imagine the anguish and torment you’d have to endure if your situation becomes a nation-wide political football. Terri Schiavo did not have a living will. Now obviously that level of mess is rare, but our own little soap opera version can become just as tormenting and tumultuous. Still, even with a living will we may find we’ll have to fine tune things a little more with the Do Not Resuscitate document.

The Do Not Resuscitate says that if  the ill person’s heart stops or if they stop breathing, nothing is to be done to resuscitate them. That’s pretty much it. The DNR only comes into play when a person can no longer breathe or their heart has stopped. This is also a legal document created by the state with its own nuances as per the state laws.  It’s a simple, straight forward directive and it is binding. Don’t expect the other documents to provide for this option. It is the DNR that will ensure you will not be given cardio or resperatory emergency services. So if you want to be left alone, should you get a heart attack during your end of life care, be sure to have a DNR, otherwise the emergency services have the power to be there with all their gear and give reviving you a go.  Our hospice care provider went over this with us and arranged the paperwork. It was something that had to be signed off and approved by K’s primary doctor.

These three documents can be incredibly calming to have and though it sounds relatively simple, they do represent some complex issues. And, as I mentioned, you do need to understand what’s needed from your state.

Even though I didn’t fully understand the importance of these documents as we were getting them, I became very appreciative of the comfort they gave us, especially when they came into play. I can only thank K for her insistence on getting this done. I was also quite fortunate in that K’s family are an amazing group of people. They always interfaced with us showing great respect and understanding. Some people will not find themselves in similarly agreeable company.

Here are some excellent resources to further your understanding on this subject. If you know of other outstanding resources please comment.

Resources:

End-Of-Life Decisions: This is a comprehensive document created by an organization called Caring Connections, a program of the National Hospice and Palliative Care Organization that provides free information about end of life care.  This is a very complete document.

Living wills and advance directives for medical decisions: a good one page explanation on the Mayo Clinic website.

End-of Life Decision Making: This is a page on the Family Caregiver Alliance website. It’s very well done taking you step by step with the decision making and providing good descriptions of the various legal documents. The FCA also has an amazing section dedicated towards State Legal Help and Advocacy.

Advance Health Care Directives and Living Wills: I found this on Helpguide.org. It’s very well written and brings some other issues to light such as in a great little section entitled Misconceptions about Advance Health Care Directives.

Arizona Life Care Planning: I have included this as an example of something you may be able to find in your own state. This particular page found in the link is made available by the Attorney General of Arizona and provides the information and documents someone in Arizona will need for advance health care directives.

Comments»

1. Terre Mirsch - October 8, 2012

Thank you, Ira, for your comprehensive overview of the decisions to be made and the documents that can help ensure that we get the care we desire at end of life. Despite most people’s preferences to be cared for at home, free from pain and other symptoms, only 1 in 3 Americans will receive care in accordance with their wishes. Making these decisions and preparing these documents before a crisis occurs is critical.

2. ijwoods - October 9, 2012

Thanks Terre, what really strikes me is all the different bits that comprise the vast world of end-of-life care caregiving. The thought that I have to protect my own, or my loved one’s, wishes seems so odd, yet without doing so we may be subjected to everything we don’t really want.


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