Do Patient Preferences Really Matter?  An Important Advocacy Issue for Family Caregivers

The healthcare industry is abuzz with “Quality of Life”.  There’s tools, measures and even financial incentives dedicated to Quality of Life goals and outcomes. So, we’re good, right?  The system is listening.  Umm, not so fast!

What Family Caregivers Need to Know.

Going Through the Motions…What Should We Expect?

Do the doctors, nurses, etc. you and your loved one(s) encounter ask about things like:

  • What are your health goals?  In other words, what do you want to be able to do/enjoy on a daily basis?
  • Are there things you never want to experience?  What are those things?
  • Is your condition impacting your life?  Are you less happy?  What makes it hard to cope with it day-to-day?
  • What worries you?

Or, have you and/or your loved one been handed a Quality of Life questionnaire to complete?  And, did anyone go over the answers to get a better understanding?

Let me share a story with you.  I recently accompanied a family on an important meeting with their doctor, to discuss next steps and care options.

 What Happened?  Test results were discussed. Explanation of recommended treatment was provided. Q&A. Forms were reviewed and signatures obtained.  Dates of scheduled next set of exams and treatments provided.  At the end of the appointment, a 5-page quality of life questionnaire was handed over, to be completed before leaving.

What Didn’t Happen? Signals of worry were not picked up or addressed.  Living 3 hours away from the treatment center, issues of travel schedules and related expense worries were not tackled.  Staff did not return to look at or go over the answers to the Quality of Life questionnaire with the family…we were instructed, instead, to leave it with the scheduler.

Why Understanding Preferences and What Brings Quality to Your Life is Important.

Let’s get personal.  If I were to say to you that you need to stick to a treatment plan that I’ve outlined for you, requiring you to visit my (doctor) office once a week for the next 6 weeks, have weekly blood labs done and take this medication I’m prescribing for you that will most likely make you sick to your stomach, for which I’m going to also prescribe something to help offset the nausea…would you do it?  I’d surmise that your answer would be dependent on what you’re getting out of all of this.  And, that’s precisely the point.

Quality of life is what motivates people to deal (or not) with an illness!  People simply are not motivated to participate in a medical regimen if it interferes with and/or doesn’t improve the way they function on a daily basis OR if it makes it hard to keep doing the things that bring happiness to the person. Also, the mind and body are connected.  So, even if the clinical pieces are being carried out as prescribed, but the individual is miserable, sad, or depressed because how they want to live their life is being compromised, the end results may just not be favorable at all.   So, it’s critical to know what your loved one’s preferences are and that they communicate those clearly.

How Can Family Caregivers Advocate for Their Loved One?

Know Their Preferences; What Makes Them Happy; What They Will Accept and What They Will Not

You are their advocate.  So, it only makes sense that first and foremost you’ve had conversations with your loved one about their preferences and how they want to live their life.  As well, you’ll want to have had the conversation about how they want to be cared for should there be a sudden change in their health, a terminal illness, commonly known as end-of-life discussions.  Here’s a link to a wonderful video and tools to help start “The Talk”.  Make sure that you’ve discussed and seen their living will and/or advance directives.

If Questions and Discussions Are Not Happening, You Can Initiate Them

Of course, make sure that your loved one and you have spoken prior about their willingness to have you speak up for them.  Reference conversations you’ve had with them and recall what they’ve previously told you is important to them.  Get them to confirm for the doctor/nurse/staff.

Ask the staff to please review responses written in the quality of life questionnaire together.  Your role will be important here, to ask clarifying questions, ensure everyone understands what’s being communicated and give your loved one comfort in knowing that their voice and your support are being heard.

Ensuring Preferences are Heard and Addressed

Ask for confirmation of the care plans.  If you’ve been talking about schedules, ask for a copy and make sure that the concerns or worries have been reflected and accommodated.  Make sure that the actions follow what’s been discussed and that everyone is clear.  As time moves on, perspectives and feelings of your loved one can change.  Be sure to check back in frequently and support getting any changes discussed and incorporated into the plan of care.

 

Preferences Matter!  And, with the help of family caregivers advocating for their loved ones, there will be a lot more healthcare providers out there listening.  You’ll make sure of it!

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