2 posts tagged “team-based health care”

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

Posted September 7th, 2018 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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Creating Your “A Team” for Health

Posted October 3rd, 2012 by

Today’s guest post is written by PatientsLikeMe Vice President for Advocacy, Policy and Patient Safety Sally Okun, RN, MMHS.

SallyOkun

Getting health care can often feel like you’re trying to put together a difficult jigsaw puzzle, only to find that some of the pieces are missing. Even under the best circumstances, navigating the health care system is challenging for patients like you and your caregivers.  Worse, when health care is provided in an uncoordinated and fragmented way, the quality of care and patient safety can be compromised.

These are all reasons the idea of “team-based care” is gaining momentum, and emerging as an important factor in helping patients better manage their conditions. For the past year, I’ve been honored to be part of a working group commissioned by the Institute of Medicine (IOM) to write a discussion paper on this topic.

Our team, made up of health care professionals and leading academics from the University of Washington, American Medical Association, Rush University Medical Center, American Academy of Physician Assistants and American College of Clinical Pharmacy, pulled together all that we learned during our monthly meetings, interviews with teams from around the country and input from national experts on “team based care.”  The result is a co-authored paper, published this week, by the IOM.

Defining "Team"

Among the goals we have at PatientsLikeMe is to amplify your voice – the patient voice – in relevant and system-changing initiatives and bring what we’re learning back to you.  As I share with you now the five hallmarks of the most effective teams, I want you to know that much of what we discussed is how you, the patient, are at the center of these teams.  Your needs, preferences and concerns are central to the team’s work.

So, what do you need to assemble your very own “A Team” for healthcare?

Shared and well-defined goals: Patients like you and, where appropriate, family members or other support persons, must work to establish shared goals that reflect your priorities.  Be sure your goals are understood and supported by all your team members.

Clear roles:  Each member of your healthcare team has specific responsibilities. Clear roles help all members of the team share the load, so the team can accomplish even more together than one can accomplish on their own.

Mutual trust: To reach your shared goals, it’s really important for you and the members of your team to earn each other’s trust.  Without this trust among the team it can be difficult to work well together

Practiced communication: Good communication takes practice and even the best teams continuously work on ways to improve this.  With all of the tools we have to communicate today, be sure your team knows what you prefer  – in person, on the phone, via email or text, etc.

Measured processes and outcomes: As you and your team create your healthcare plan, be sure it includes ways to measure how well you’re doing on meeting your goals. This translates to better care, and potentially, better results.

PatientsLikeMe member sokun

Note: The IOM working group was honored that the Journal of the American Medical Association (JAMA) asked it to contribute a Viewpoint piece on team-based care, highlighting the role of the patient on teams. You can see the Viewpoint piece, published today, here.