…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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Our Dialogue on Dying From Kübler-Ross to Twitter
Tag : Dying

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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3_what about a physicianThe fact is physicians may or may not give their personal opinions on what decision ought to be made. Not all doctors will say, “If this were my parent, I would do such and such” or “If this were me, I would want this done or that done.”

Here are three basic reasons for doctors giving or not giving an opinion. I’m sure there are more but these are the ones shared with me most often.

  • Some physicians fear sounding authoritarian and steer away from giving you their opinion. They don’t want to feel they are leading you to select what they suggest.
  • Others believe that you and your family are paying for their expertise and training and feel they should give their opinion.
  • Still others are prompted to propose a treatment because they believe it is unfair to place the entire decision on the family, as that may leave the patient and family not knowing what to do.

So how does this help you and your loved ones when facing difficult choices and decisions?

What’s important is to remember you and your family, ultimately, are the ones deciding what course to take. Also your family or proxy is not obligated to follow whatever the doctor says.

Another thing to keep in mind is that our backgrounds affect decisions we make as patients and family members. For some of us, discussions about advance directive planning are a sign of disrespect, so the family actually prefers the health care provider to initiate the discussions and make all the decisions about life-sustaining treatments. This is fine. You have the option to turn the decision-making over to the medical staff and let them take the lead.

Certainly if a physician gives an opinion along with the benefits and possible drawbacks to a treatment, you and family still need to consider how this affects your wishes about how you would like to die.

What’s often missing is an honest discussion about dying care. Who should sit down with you and your family to talk about how you want to die: your primary care physician, the hospitalist, or a specialist? Who knows you best? Often times these experts are helpful, but many of us these days elect to sort this out by ourselves. The biggest thing to recognize is dying is all about you and requires more than discussing your illness or treatments.

What about you? What have you experienced? Please share with us what you think.

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WaitingA friend of mine is dealing with a very difficult situation, needing medical assistance to stay alive. She’s on a dialysis machine going for a third transplant.

Her older brother is going for testing now to be a live donor. This would be three times with living donors willing to save her life. The first transplant lasted twelve years, the second, ten. She’s in her 50s. Donors, doctors and medicine clearly are her heroes.

There’s no question she is facing tough stuff but her attitude speaks volumes. She’s one of the most vibrant and brave people I’ve met.

She wrote me to say that the subject of dying is completely terrifying to her and said that’s true for the many others who are fighting for their lives every day.

Dying scares me too.

But it isn’t a choice. We are all going to die. Knowing this doesn’t make it any easier to talk about it but not talking about it can lead to unwanted care. And unwanted care is wrong care.

That’s why I write about dying. We can choose how we wish to die by making our choices reflect who we have been our whole life. How our beliefs, background, family, and experiences all come into play as we live every day to the end of our days.

Dying is deeply personal and should be about you. That means knowing your wishes and the wishes of those you love.

It’s knowing you are going to die and being prepared for it at any time. That’s better than not having the conversation and an advance care plan. That’s better for you and better for your loved ones.

I reflect on her words and yes, it’s hard to know what to say to her. I want the best for her. Now and tomorrow and the next day and the day after that. I hope she thinks about what she is saying and thinks about what I am saying too.

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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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