8 posts from September, 2018

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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Getting back in the groove — 5 hacks + hints for routines that work

Posted September 4th, 2018 by

Even if you haven’t been a student for several years, back-to-school season feels like the time to get back into a routine. What’s involved in a good routine? And what are the potential health perks of a basic regimen? See what the research shows, and join PatientsLikeMe to swap ideas with other members in this forum chat.

How can routines help?

In the business world, countless books and blog posts have touted the importance of routines when you want to succeed.

Many PatientsLikeMe members have talked about the value of routines in coping with a health condition (log in and check out thousands of mentions of “routines” in the forums).

“For me, having a routine with a chronic condition is a must,” says one member with fibromyalgia. “I don’t have to think what I have to do, it is already in my routine.”

Health-wise, having a regimen can help people of all ages. Studies of preschoolers have shown that family routines (with regulated meals, bedtime and screen time) may improve kids’ emotional health and reduce the risk of obesity.

Johns Hopkins Medicine reports that healthy habits and routines help older people, as well. See their seven-year study of people ages 44 to 84 who significantly reduced their heart-health risks by adopting and sticking with certain healthy behaviors (like being physically active for 30+ minutes most days of the week). HMHB highlights the best cannabidiol oil for weight loss for adults looking to shed those few extra founds.

What’s involved in a good routine?

Humans are creatures of habit, so routines offer the structure we crave and can help relieve stress. So what goes into a (generally) healthy routine? And what can you get out of it in return?

  • A solid sleep schedule — with the same bedtime and wake-up time, even on weekends — helps regulate your body’s internal clock and sleep more soundly at night, according to the National Sleep Foundation (learn more in our recent write-ups on circadian rhythm and bedtime routines).
  • Healthy, regular meals (home-cooked, if at all possible) mean you’ll have the energy you need and won’t reach for fast food or junky snacks too often. Some people swear by a weekly meal prep day. Research also shows that when we eat (not just what we eat) can impact our circadian rhythm and longterm health. For example, eating over the course of a 15-hour window each day (rather than an 8- to 10-hour span) may throw off your metabolism.
  • Building in time for physical activity and self-care can help boost both mental and physical health. Studies have found that even light exercise is beneficial. Calming activities, like guided meditation and affirmations, or writing or sketching in a journal, are a nice way to start or end the day.
  • Embedding your medication regimen into your daily routine may also help you stick with your treatment plan. One study found that an activity- or cue-based system, such as taking medications while your coffee is brewing or during the weather report on the morning news, works well for some people, rather than just relying on the clock.

Check with your health care providers for personalized advice, of course.

5 hacks and hints for routines that stick

Have you struggled to stick with routines in the past? Consider these fresh ideas and approaches:

  • Stock up on supplies to help keep you on track (just like students do!), such as a daily planner, or colorful sticky notes and pens to jot down reminders and keep tabs on taking medications. You can find lots of nifty gear these days to help you store medshit your hydration goals and more.
  • Turn to technology, such as smartphone alarms and smart home devices to give you a nudge. From wearable activity trackers to apps that remind you it’s bedtime and alarm clocks that mimic the sunrise, there are more and more products geared toward healthy habits.
  • Try weekly routines with catchy names, like “Meatless Mondays,” if you’re trying to cut back on meat, “Takeout Tuesdays,” if you want to limit restaurant meals to just one day a week; “Long Walk Wednesdays,” and so on. Having an achievable motto for each day can keep things fun.
  • Set up cues and mini-rewards for yourself when you’re trying to weave a healthy habit into your routine. For example, if you’re forgetful about taking your meds but you love wearing jewelry every day, put a note in your jewelry box that says, “meds before bling.”
  • Tap into the PatientsLikeMe community! Join the site or sign in to access the following links. In the Mental Health forum, members have been tracking their daily goals together as a community for years. Consider adding to that thread, starting a similar one in your own condition forum or simply posting daily updates on the site to spell out what you’re hoping to accomplish today.

The “best” routine varies from person to person, but ultimately it involves a series of actions that have the potential to become automatic and (ideally) help you live better today. Think: autopilot.

What’s in your daily routine? Have you had success or trouble with getting into good routines? In this forum discussion (psst — join us or log in!), members are swapping ideas and offering support.

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