8 posts tagged “patient empowerment”

Advance directives: What are they and why should you have one?

Posted 9 months ago by

If you find talking about end-of-life care and advance directives isn’t easy, you’re not alone. One 2013 survey by The Conversation Project found that while 90% of respondents said talking about it with loved ones is important, only 27% actually started the conversation. And according to another recent study, as few as 38% of patients living with a chronic condition in the U.S. have an advance directive.

But planning ahead about the decisions you want your care team to make if you’re unable to communicate — and putting it in writing — can bring peace of mind and reduce confusion for loved ones later on. Let’s take a closer look at what advance directives are all about and how to start the process.

What’s an advance directive?

According to the ALS Association, “an advance directive is a legal document used to instruct others about your health care wishes. It acts as a guide for your loved ones and health care providers to make health care and treatment-related decisions on your behalf, should you become unable to convey them due to illness or incapacity.”

Types of advance directives

There are a few different types of advance directives that vary by state. The two most common are the living will and the durable health care power of attorney (or health care proxy). Let’s break these down:

living will is a formal, legal document (written and signed by you, the patient) that informs certain future health care decisions (about medical treatments like pain treatment, tube feedings or the use of breathing machines) when you’re unable to make decisions and choices on your own. These are for situations involving terminal illness or permanent unconsciousness.

durable power of attorney for health care (or health care power of attorney/proxy) is a legal document in which you name a trusted person to make all your health care decisions if you’re unable to on your own. The proxy can decide on treatments or procedures based on what you do or don’t want. If your wishes aren’t known, the proxy can decide based on what he or she thinks you would want.

What are the benefits of having one?
  • Peace of mind. It gives you an opportunity to plan for the future and talk about your health care preferences with your loved ones and care team. Knowing that they understand and respect your wishes can give you peace of mind that your wishes will be honored even if you can’t communicate.
  • Protect your loved ones. An advance directive, and the conversations leading up to it, give your loved ones the ability to understand what you would want in different health care situations. If they ever need to make decisions on your behalf, it can help minimize guilt and uncertainty.
  • Empower your care team. Your health care providers will know how you would want to move forward with (or stop) treatments.
Do you need a lawyer?

A lawyer could be helpful but isn’t necessary to set up an advance directive. State requirements vary so be sure to stay on top of what forms are required in your state.

Can you change your mind?

Yes, you can make changes to your advance directive at any time, for any reason. Make sure to keep your health care agent/proxy/decision-maker in the loop on any changes and keep updated documents on hand.

Things to consider:

Advance directive forms list examples of different situations to think (and talk) about with your family and care team, depending on your situation. For example, here are a couple ALS-specific treatments to consider:

  • Feeding gastrostomy tube placement (some members have talked about this in the forum)
  • Invasive mechanical ventilation with tracheostomy
Ready to start the process?
  • Choose a trusted decision-maker and start the conversation. Pick someone (or multiple people) as your health care agent or proxy (decision-maker) and talk to them about your wishes. Open and honest communication is important so they can understand your preferences and make decisions on your behalf. Check out this Conversation Starter Kit.
  • Talk to your doctor (check out this how-to guide)
  • Put it in writing. Outline what type of care and treatments you would or would not want, depending on the situation & possible outcomes. (The Five Wishes document could be a helpful guide to writing your wishes)
  • Download your state’s advance directive form
  • Make copies and give them to your family, loved ones and care team. If you make changes, be sure to swap out the old versions with the updated ones.

Check out these resources to learn more about the different types of advance directives and how you can start the process.

Do you have an advance directive? Join PatientsLikeMe today to learn more and see what the community is saying.

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The power of your data: Patient empowerment

Posted December 14th, 2016 by

We’re more than halfway through 24 Days of Giving and we’ve been sharing how patient data has the power to create better communities, better care and a better you. So, while we’re on the subject of you – let’s talk more about how patients see themselves as the captains of their own health when it comes to care. That’s right: patient empowerment.

The results of a study we did a while back with our partners at Genentech have just recently been published in a scientific journal called “The Patient – Patient-Centered Outcomes Research.” What was this study about? Simple. It was about how finding healthcare information, interacting with peers and providers and access to healthcare contribute to your sense of empowerment as a patient with a chronic condition.

More than 3,988 of you participated. What was discovered? Check out some of the top takeaways:

Empowerment comes in two kinds:

  • Positive Patient-Provider Interaction (i.e., how favorably you view the care received from your healthcare provider)
  • Knowledge and Personal Control (i.e., how well you understand, manage and control your health condition(s))

Empowerment varies:

  • The average score on “patient empowerment” (on a scale of 15 – 75) was higher among patients with primary complaint of Parkinson’s disease (average = 62) and multiple sclerosis (average = 60) than those with fibromyalgia (average = 55) and chronic fatigue syndrome (average = 55).
    • Ooof, that’s barely English. Said another way, it appears that fibromyalgia and chronic fatigue syndrome patients feel slightly less empowered than people living with Parkinson’s or MS.
  • But across all conditions, those who were older, male, more educated and insured also reported significantly greater levels of empowerment.

What’s most important to you when it comes to empowerment?

For you, it’s important to:

  • be active in treatment goal setting with providers;
  • make sure that your provider spends enough time with you answering questions;
  • make sure that you understand the treatment and diagnosis, and any materials that are given to you; and
  • learn about and understand disease warning signs/symptoms, disease progression, and available treatment options. 

Knowledge is power:

How do you learn about your condition?

  • You use health websites like WebMD and Mayo Clinic (87%), PatientsLikeMe.com (60%), books (43%), magazines (40%), and journals (36%).
  • More than half of you get health information verbally from a doctor (59%).

What do you learn about your condition?

The information you find helps you learn about…

  • Treatment options (83%)
  • Course and progression of your disease (76%)
  • Signs and symptoms (68%)
  • Cause of condition (51%)
  • Initial diagnosis (50%)
  • Health monitoring (48%)

Doctor relationships:

  • Many of you are satisfied with your access to healthcare services (64%) and your relationship with your doctor (77%).
  • The majority of you (79%) feel like you have a say in your treatment decision-making, and are satisfied with the care you receive from your doctor (73%).
  • Some of you feel that your treatment goals don’t match your doctor’s plan (34%), or that you don’t spend enough time with your primary doctor during visits (36%).

Peer support:

  • For 47% of you, friends are a source of support and help care for and manage your condition.
  • Most of you manage your condition with help from others (74%) and learn from the experiences of those who are part of online communities like PatientsLikeMe (69%).

If you were one of the many who contributed to this research – thank you. What you shared proved that the differences in empowerment levels across conditions warrant further study. That’s the power of your data in action!

 

 

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