Client Discussions: Where Do Spirituality and Religion Come In?

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My travels over the past two weeks have ultimately taken me to Florida where I’ll be staying for awhile to spend time with my dad.  It’s the latest in many, many visits, which I mention only because that means I have gotten to know many of Dad’s friends over the years, too. In fact, I’ve gotten to know a handful of them very well, so that I actually seek them out once I get here to be sure I have the opportunity to spend some time with them.

One such friend is a gentleman I’ll call Jim, who lives next door to Dad. A retired lawyer, Jim has now become a Eucharistic Minister who calls on many sick people and leads services on a Sunday morning.  He is well-respected and admired by so many, a man who balances his sense of fairness with his religion and spirituality. He puts a great deal of effort into making sure that anyone who would like to attend his services, regardless of their religious affiliation, is welcome to do so.

The three of us enjoyed brunch together today, and as it frequently does, the conversation turned to how life experiences were affected by our spirituality, the meshing (or repelling) of religion and politics, other people’s experiences as seen through a spiritual lens, and more…. Since Dad and Jim both live in a senior transitional-type community, where friends are often undergoing medical treatment, and where too many friends pass away, some of the discussion centered on healthcare and spirituality.

Midway through this morning’s conversation I realized (duh!) that perhaps spirituality is a topic advocates should be addressing with their clients. Considering the tendency of most human beings, whether or not they are religious (part of a specific religion), to turn to prayer and pastoral support when they are faced with a health crisis (their own, or a loved one’s), it seems that at least discussing spiritual needs with clients could be useful in at least three ways: Continue Reading →

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Getting Your Clients Past Magical Thinking

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Today’s post is very personal, reflecting a situation I believe many families go through, brought on by any number of attitudes and fears.  I’m hoping that by sharing it, you can find a role for your advocacy work.

It’s about providing a gift to some of your patients and their families – in effect, giving them permission to say no to further treatment.

As I thought about the situation, I remembered back to a blog post I had written almost four years ago called “When Is It Time to Just Say NO to Further Treatment?”  When I wrote it, I was referring to my mother who at the time was in her 10th year of her Alzheimer’s diagnosis and had little or no cognition left, yet my father kept insisting she be treated for every urinary tract infection (UTI) she acquired (or, perhaps more like, never really got rid of.)  It made no sense to me, yet Dad was just so desperate to keep Mom alive.

My post was based on this article from the New York Times:  In Cancer Therapy, There Is a Time to Treat and a Time to Let Go which talks about patients desperately insisting on treatment, even though it not only won’t prolong their lives, but will actually cause them more distress. In effect, helping them get past (what many experts call) Magical Thinking.

The question is:  Who suggests to the patient and family that a treatment isn’t magical?  Who helps them get past wishful thinking and into reality?  Who says to a cancer patient, “Chemo is toxic, and while you might get an extra week or two on this earth, you’ll be sicker for that time – your quality of life cannot be improved. Are you sure you still want to put yourself through that?” ??? Continue Reading →

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Improving Patient Relationships – What I Told the Providers

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To say my trek to Alaska was overwhelmingly positive wouldn’t begin to touch the real experience.  Alaska itself was glaciers, salmon, midnight sun, king crab legs, and learning that in Fairbanks everyone has an extension cord popping out the front of their cars, so they can plug them in during the winter to keep the engine and oil from freezing. Who knew?

But the most fulfilling experience was working with the people who attended the workshops I taught.  Warm, open, receptive, fun, willing to participate and learn, they were doctors, nurse practitioners, nurses, nurse educators, dieticians, pharmacists, a psychiatrist, front desk people, techs of all flavors – you name it, they were there.

Since this invitation to speak to providers first came along last February, I have looked forward to the opportunity with excitement – and a bit of apprehension.  I’ve often stated my own disapproval of doctors who write books to tell patients how to be smart patients. I consider it to be a bit like the doctor-foxes telling us chicken-patients how to behave in the hen house.

So it was a little unnerving to realize that, in effect, I was doing almost the same thing – being the patient-fox telling the provider chickens how to behave in THEIR hen house!  But my apprehension was unfounded.  I was well received – even embraced.

The topic:  Improving Patient Relationships.  The basis:  The health systems in Alaska are mostly government-based.  A large percentage of the residents are either military, or military veterans, or native Alaskans who get free healthcare – many of whom have a sense of entitlement and little patience for a system that isn’t ready to serve them at the very moment they want to be served in the very manner they want to be served.  It won’t surprise you to learn that there is a lot of frustration to go around.  The goal:  to provide tools to these providers to help them serve their patients better by improving the relationships they develop.

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Need to No – Giving Too Much

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One of my favorite things about patient advocates and navigators is that they are very generous, kind and giving people. They figure out what needs to be done, and they step up to the plate to do it.

But one of my frustrations with patient advocates is that some are too generous, too kind, too giving.  Too many have never learned where to draw limits, how to assess when they’ve taken on too much, or are in danger of taking on too much. They just don’t know how or when they “need to (say) no.”

Conversations with two APHA members remind me of this.  And it’s worth sharing with you because it may give you the kick in the backside needed to learn to say no when you know you should.  Sometime before you begin dropping all those balls you’re juggling.

One case is an advocate who I will call Molly.  (We have no members named Molly, so don’t try to figure out who I’m talking about!)  She lamented the fact that she just didn’t have enough work, and was worried about keeping her business afloat – yet – she told me how busy she was with clients. I finally figured out that all those clients were people she was helping for free.  They needed help, they could not afford to pay her, so she just began helping them anyway.

How very generous!  Remarkably generous, really.  And I applaud her for that – except – in effect, she was volunteering her way right out of business.  All her time was being spent helping those folks for free, instead of doing marketing, making phone calls, drumming up some speaking opportunities – tasks that could help bring in paying business.

Not to mention the level of stress  (and loss of sleep) when we are not only overworked, but worried that business isn’t going well.

“But,” you say. “Those people need help too!”  And I agree.  But there needs to be a point where you realize that if you spend your time working for free, and don’t stick to building your business, you will go out of business.  At that point, you can’t help anyone all.  No one. Not on a paid basis OR on a volunteer basis, because you will have to go out and get a job that will make up the difference. It’s not worth it.

The solution?

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What Health Advocates Can Learn from 9/11

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With the demise of Osama bin Laden, I’m reminded of experiences I can share with patient and health advocates and navigators that will help us do our jobs better.

Many readers of this blog know that the reason I do the work I do is because I was diagnosed with a rare, terminal lymphoma in 2004.  Being told I had a terminal disease was heart-stopping and terrifying. Even today there are certain triggers that drum up all that emotion. Post traumatic stress rears its ugly head….

Of course – I don’t wish that for anyone who ever reads this blog!  However…

I believe that to truly understand how horrifying such a diagnosis is, you have to live it.  But if you have never lived it, I can give you a metaphor. If you will give this some thought and embrace it, you will become a better advocate, because you will better understand how your client feels.

Close your eyes, and think back to 9/11 – and 9/12, 9/13, and those subsequent weeks and months….  Think back to the moment you watched those planes fly into the World Trade Center on TV, heard the news, saw the photos, spoke to a loved one, cried.  Embrace the fear you felt.  Remember that horrible feeling that we in America had lost our innocence, but even worse, any sense of security we had felt our entire lives to that point. We became afraid of doing ordinary things – being in crowds, flying in planes – our everyday lives were disrupted in ways we never could have imagined.  And – we knew we could never go back to the innocence of 9/10.  We had to learn to deal with it.

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