…Practical advice on finding a connection with who you are, what you're about and what a good death means to you as you grow inwardly and age outwardly.
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A HEALTH CARE PROXY MANDATE: It’s time? The military do it. Police do it. Firemen do it. Why don’t we do it too?
Tag : End of Life

shutterstock_149868134For these professions you are required to select someone to speak for you when you cannot in case of a medical crisis. Of course it makes sense because these individuals work at higher-risk jobs than say those of us who work behind a desk or sell merchandise. These brave souls live more on the edge.

But a medical crisis or emergency can happen at any time to any one. So why not be prepared? Why not decide that this mandate is a wise one?

BUT…..WHO SHOULD BE REQUIRED?

Twitter me your response with this tagline #HCProxy Mandate:

Yes or No for mandating and who should be required to do it.
I’ll tally it up & let you know the results from the responses.

Here’s the beginning of a list of possibilities:

  • Selective service registrants
  • High school students over 18
  • College and university students
  • Hospital staff
  • Licensed healthcare professionals
  • Anyone with health insurance
  • Medicaid and Medicare recipients
  • All federal employees, or state employees, or city/county employees
  • Everyone with a driver’s license, commercial driver’s license, boat owners
  • Medical and law school students

Now this possibility, medical and law school students, could be a good one to start with because advance medical directives are associated with legal and medical choices. Our future doctors and lawyers could insist on selecting a healthcare proxy, an action speaking volumes about its importance of having someone there in the decision making process that knows your wishes for care and could make sure they are honored.

None of these cost much to implement. Some more than others for sure but still, isn’t this cost easier to bear than the cost of not having someone speak on your behalf to say what you want or don’t want for care?

WHAT DO YOU THINK?

Let me hear from you. Twitter me, @murdockdiane, your response with this tagline #HCProxy Mandate: Yes or No for mandating and say who should be required to do it.

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Let’s step back and think about how much the experiences of the dying teach us about it. In 1969 Kübler-Ross published On Death and Dying and yes, it went “viral” for its time. It was groundbreaking, a profound lesson for the living, and was about what the dying have to teach us — doctors, nurses, clergy, and all of us. Now let’s fast forward to Scott Simon, the popular radio host of NPR’s “Weekend Edition Saturday” tweeting powerful stuff for a week last month about everything he experienced in the hospital as his mother lay dying. So if we’re listening and learning from those who are dying, social media is perhaps indeed the next step toward dying awareness and knowing that your wishes for care wanted when gravely ill and near end of life is the care given when the time comes.

The Atlantic’s article in its August publication on these tweets was right on the mark talking about how social media is changing the way we approach death. Some say what was shared by Simon was too personal, too morbid. But there were some who believed this about Kübler-Ross way back when. Perhaps it’s not relevant whether you feel this way or not.

These days there’s already a lot of this kind of sharing of our pain, illnesses, treatments, reactions, and experiences, on occasion or minute-by-minute on platforms like Facebook and Twitter. And we’re sharing our stories on websites such as Conversation Project, What Matters Most, and Compassion and Choices. Illness blogs like CaringBridge and CarePages are yet another way to let others know what you’re going through and getting support and feedback.

The Atlantic article is a good one for sure about the powerful change social media is making toward talking about dying experiences but there’s something that wasn’t said and definitely needs saying. Talking about experiences with dying is not the same as having the talk about dying care.

Here’s one thing particularly significant that Scott Simon shared, “It’s not that I think people should spend a lot of time thinking about death, but that they should spend more time thinking about the fact that our lives are precious and finite. …Appreciate the fact that every second and every hour is utterly precious.”

Oh yes, I totally agree with this and it’s important to realize. And yet, what’s missing from our discussions in social media and its impact on the way we approach death is where this can go to help us face dying and letting go. I believe it’s pointing to more than just social media as a natural extension of “I want to share my illness experience with you.” The bigger extension, larger than life, is whether these scenarios make you look at, reflect, and consider “is that what I’d want”, “what would I do differently.”

It’s taking this abundance of shared moving information to make our life precious to its end. Realizing that having a plan, being prepared to die at any time, having an advance directive, having a proxy, talking about dying care that’s all about you, isn’t just for those who are old and frail or ill but for all of us. That dying awareness is talking about dying over time as you grow inwardly and outwardly.

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belle

Last week my golden retriever Belle and I went to visit our friend Louise Wilson at Atlantic Shores, a continuous care facility in Virginia Beach. We sat quietly in the lobby waiting for her. Others who lived there stopped to pat her head, scratch her tummy, and call her the sweetest things. She’s one of those dogs whose tail wags vociferously and face holds a wide grin.

A man named George came over and sat with us and said, “I have a story to tell you.” I love stories and so he began:

I had a golden retriever named Bobby, bout the same size as your dog. We got him as a pup when I was in my late 60s. Shared years of sitting around and taking long walks. Bobby, my wife, Greta, and I were all growing old together. He had that same smile just like your dog here, Belle. When Bobby was 14 he was having a lot of difficulties — trouble walking and standing. Eating no longer seemed to hold the same pleasure. He was simply old and ailing and in great pain. He looked as miserable as he felt; that smile of his wasn’t there anymore. His eyes spoke volumes and if he could have spoken, words were unnecessary. They would have been redundant anyway. 

We decided we couldn’t watch him suffer like this anymore and took him to the vet. We felt it was best to give him peace and put him down. We left heartbroken saying our last goodbyes. We couldn’t bear to stay.

The vet called the next day, “I have something to tell you. Yesterday when you left, something changed with Bobby. He perked right up. We observed him and couldn’t follow through with putting him to sleep. Why not come over here and get him!” We were overjoyed to bring him home.

He was indeed like his old self and his smile was back. He ate a big dinner and curled up at my feet while I read a good book. Next morning, we found Bobby had died that night at the foot of our bed. You see, what happened is Bobby just wanted to come home to die and have us by his side.

George looked at me, “Good story, right?” “One of the best,” I said and thanked him for sharing it.

It truly was a great story how Bobby got his wishes without saying a word. I wish we could do the same about our care wishes when dying but it very rarely happens that way. And our silence on the topic of dying is associated with it being morbid and so we avoid the subject. But we need to have a plan about how we wish to die, where and what we want for care.

Morrie Schwartz, the old professor and humanist in Mitch Albom’s book Tuesdays with Morrie, said some powerful words that speak to the heart of how we die in America and how we don’t want to think or talk about it, “There’s a better approach. To know you’re going to die, and to be prepared for it at any time. That’s better.”

 

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iStock_000002754809SmallIs this a silly question? And if it isn’t, what is it about dying that makes it so hard on our family and ourselves? Is turmoil and contention between family and doctors necessary in the process of dying?

Sadly, there are times when medical staff and family members don’t agree on a patient’s treatment. This often centers on discontinuation of life support when the medical staff feels treatment is not indicated, but the family wishes it to continue. In these situations medical staff may ask a hospital ethics committee or board to advise on continuation or change in treatment.

What’s interesting is these consultative bodies were almost nonexistent before the ’70s — before medical and moral decisions were not as integrated as they can be now.

What does an ethics committee do anyway? While doctors may be inclined to do everything to keep a patient alive, an ethics committee will explore what’s meant by “everything,” weighing possible treatments against what is appropriate and beneficial.  No, a hospital ethics committee doesn’t take action or give orders. It only recommends, and the medical staff can take the recommendation or not.

Now these circumstances are difficult, but there’s a silver lining. With end-of-life issues, the attending physician may feel that the committee’s recommendation in a sense gives “permission” to let go of his patient and stop specific medical treatment. Likewise, when the physician shares the recommendation with a family and takes action based on the recommendation, the family is helped in the process of letting go of their loved one.

But what’s really difficult is this whole other thing around futile care.

If efforts to resolve differences in treatment goals persist among the physician, the bioethics committee, and the family, most hospitals have medical futility or “nonbeneficial care” policies supporting the hospital bioethics committee on decisions regarding the quality of a patient’s life and the efficacy of treatment.

States enacted futile-care statutes beginning in the 1990s. These laws center on a physician’s determination of futility that is contrary to the request in the advance directive or the wishes of the proxy or family.

But think about this: Who among us is being protected by these statutes? Basically they are designed to protect health care providers in defending their position of good medical practice when they determine further treatment would be without purpose or benefits.

What these laws do is this — the physician is required to inform the family that they have the option of either making arrangements for a transfer of care to a facility that will respect their wishes, or preparing for withdrawal of life support. Clearly, this is very difficult for the medical staff and for the patient’s family because in most cases, no time constraint is imposed to bring about a transfer, and the statute specifies no procedural process to follow. How can this be?

Patient rights’ advocates contend that patient rights are violated because the statutes state that care is to be stopped after a certain period of time when care is deemed futile, and there’s no formal process available to the family for appeal of the merits of the ethics committee’s recommendation. Even still, the application of futile-care statutes may alleviate some of the guilt in letting a loved one die.

This centers around about what can go awry and what you can’t control. But it’s also about checking your plan and seeing if your ideas are rational. Checking your plan given the reality of the situation.

Dying isn’t easy even if it is inevitable. These kinds of circumstances are a part of the American dying practice. They are typical of how things can go wrong but are they also inevitable?

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1_Our online social networkIt’s opening us up to talking about our mortality. Even though illness and death are still very much technically driven, there are now things like blogs, websites, Facebook, and twitter chat that are all about people dealing with dying and serious conditions because they offer a safe space where they can let it out and talk about it.

A few examples of websites where you can share your story are the Conversation Project, What Matters Most, and Compassion and Choices. Illness blogs like CaringBridge and CarePages offer a designated space for you, your family, and friends to keep posted and correspond. And now there’s Vine, a free iPhone app enabling users to create six-second videos for friends and fans, which has huge potential for connecting others with what we are dealing with.

All these avenues help us release what’s going on, what’s painful, and what’s confusing. And what’s most important, I think is the listening to yourself as your sharing all this. It’s therapeutic and helping to figure out choices. It’s supporting this whole idea of knowing yourself and what makes sense to you.

This is getting at advance care planning, taking time to have a talk about how you wish to die and preparing a plan that states your wishes for care when you cannot express them yourself. Two good examples of resources for writing down your wishes are Five Wishes and Caring Connections.

This post is about getting the word out, sharing wishes for care from person to person, from parent to child and child to parent. You can give yourself the gift of being treated the way you want when seriously ill or dying. You can give your family the gift of knowing that the care given is the care wanted. You can do this but only by knowing what you’re about and what makes sense to you.

What do you think? Is there something you want to share with us?

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Posted on May 9, 2013 by Diane Burnside Murdock
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