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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What’s a Bad Outcome? And Where Does the Fault Lie?

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Scenario:

Joan, age 75, living in Ft. Lauderdale, was diagnosed with Stage IV Ovarian Cancer.  Joan’s daughter, Beth, who lives in Kansas, contacts Maxine, a private patient advocate and RN who works in Ft. Lauderdale, to help her mother.  Joan, Beth and Maxine have extensive conversations about the care Joan will need. The decision is made that Joan will need surgery and chemo.  Maxine is hired to oversee the care since Beth lives so far away.

The surgery goes well.  The hospital stay is typical. Joan is discharged from the hospital, but three days later begins to show signs of an infection at her incision location.  Sure enough, it’s a staph infection which is already running rampant through her body.  Joan dies less than a week later.

A bad outcome – no question about it.

And now Beth is furious, an emotion only heightened by her grief.  Further, Beth blames Maxine for the loss of her mother because, after all, Maxine is an RN, a private advocate, who was expected to make sure her mother came through her diagnosis, surgery and chemo so she could go on to lead a quality life for many years to come.

………………

This scenario is an extreme, I grant you.  But bear with me while you see how it influences every step you take, every conversation you have, as a private health advocate.

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Setting New Standards for a New Profession – Your Chance to Help

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As announced to AdvoConnection’s members last week, we have been working on a prescribed process for advocates who find it necessary to terminate their work with a client – in effect, to “divorce” that client, professionally, legally, and with the least amount of difficulty for both parties.  (Members will find access to that protocol in this coming week’s Monday Member Mail.)

One step in the process is the recommendation about sharing the notes you’ve kept with the client you’re divorcing, and the question about whether or not you, as the professional patient advocate, should be keeping those notes after you have terminated the relationship with the client, and if so, for what period of time.

(Please note – I’m talking about the notes and records YOU keep – not medical records which are being kept by their medical providers. You may choose to keep those, too – but here we focus only on your own notes.)

So that’s the question – how long, if at all, should private health advocates keep those notes?

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More on the Paralysis of Analysis – It’s All About the “M” Words

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Last week’s post about the Paralysis of Analysis – the situation that many almost-professional private patient advocates find themselves in – those who hesitate to take that last step – the step of reaching out to new people and asking for payment for their services – the switch from volunteer (I can do this, I’ve done it dozens of times before) to paid professional, in business, make no excuses, doin’ it for a living paid patient advocacy….

It really struck a nerve.

One advocate wrote and asked whether I’d been reading her diary.  Another said she felt like Robert DeNiro in Taxi Driver (“You talkin’ to ME?”) A dozen posts in the AdvoConnection Forum (undoubtedly representing dozens of others who read those posts but didn’t comment themselves) indicated that yes – guilty as charged – they just can’t do it.

What’s “do it”?  They just can’t ask for money. They’ve been helping others for free for years, either loved ones or friends – and they hesitate to make that leap from volunteer to paid professional.

I understand that!  It’s hard to ask for money in the same ways it’s hard to toot your own horn by telling the world about your successes.  Asking for money for your professional expertise is a lot like bragging – and of course – as we were raised, we were all told not to brag! This is particularly true for women, those of us who have grown up in a society where our contributions and hard work have often been undervalued. (I note that none of the emails or Forum posts came from men…. )

So how is it that some advocates HAVE been able to make the leap successfully?  What do they know, and what are they doing – and doing well – that others just can’t bring themselves to do?

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