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An eNewsletter for Aging Magnificently — ISSUE 6
At Lifespark we’re all about helping you stay healthy at home, navigating your health options with confidence, and living a fuller, more independent life. That’s what The A.M. Post is all about, too. Read on — we hope you enjoy!
When it comes to advance care planning, 80% of people actually know what it is, they just don’t do it. A surprising statistic considering the COVID pandemic was a brutal lesson on the importance of having an advance care directive in the event of a sudden health crisis.
One client’s daughter insisted her mother tell her what she wanted if something bad happened. Her mom’s reply: “You’ll know what I want, if something bad happens.” The reality was her daughter had no idea. She didn’t want to think about it, but she also didn’t want to make that decision if she had to.
Why do so many people not have an advance care plan? The biggest underlying reason is mistrust of the health care system, and not feeling that the health care system can follow through on their wishes. Then there are people who assume that their doctors or families will know what they want. That’s a risky gamble.
But it’s not just people who don’t take action. Often, health care professionals struggle with having advance care planning conversations, too. Talking about what someone wants at end-of-life is emotional and not everyone is equipped to do it.
One of the biggest misconceptions though is that advance care planning is only about the wishes you want at the end of life – “if I end up unable to speak or wake up from surgery, take me off life support.” As Kristin Stevens, RN, NP, and Supervisor of Lifespark’s Advance Practice Provider team points out, advance care planning goes beyond whether or not an individual wants to be put on a breathing tube. “Identifying end-of-life wishes is just a small part of a much larger discussion,” she said. “The core elements of advance care planning include contingency planning to prevent unnecessary ER visits and hospitalizations, and learning our members’ preferences for how they want to live their lives.”
In other words, advance care planning is about putting you in the driver’s seat, throughout your aging journey, and documenting what you want. Those ‘wants’ will change over time as health needs change, as your thoughts and perspectives change, as your situation at home changes – that’s perfectly fine. Perhaps you always counted on your daughter helping you, but she ended up needing to move to another state. That changes your care plan. At 65 you wanted heart surgery but now that you are 83, the idea of going under doesn’t seem as appealing to you. Life changes and advance care planning is less about death and dying and more about giving you choice in how you want to live.
Having the conversation now allows your wishes to be valued and honored if you can’t. “The best time to create a contingency plan is before there’s a health crisis,” said Kristin. “Our contingency plans aren’t that different from an asthma action plan for kids that uses the colors of a traffic light to indicate the medication, dose, and action, based on the severity of their symptoms,” Kristin explained. “For clients with heart failure, for example, their plan will include a goal weight range, and if they notice their weight is two pounds above or below that range, they know whom to call and whether they should take additional diuretics.”
When it comes to advance care planning, here are a few ideas to get you thinking:
Speak up and have a say in your care. Getting health care often involves choices that impact your life and wellbeing in different ways. Treatments only work if they work for you.
Start now thinking about what you want. Advance care planning puts you in the driver’s seat.
Talk to the people who matter most about the care you want. The more you speak up, the better your health care can be.
Tell your providers what’s most important to you. Don’t assume they know.
Document your wishes with an Advance Care Plan. People don’t want to have to remember what someone wanted, write it down so it’s crystal clear.
If you know you don’t want to go the ER for a chronic health issue, then make that known. If you were to break your hip and really don’t want to be in a rehab or Transitional Care Unit (TCU), write it down. Or if you are thinking about stopping a medication because it makes you feel sick and you’d rather have quality of life versus quantity, share that.
Doctors, providers, and even family should be part of the advance care planning conversation but how you live is ultimately up to you. Another piece of advice – don’t be afraid to talk about what you want.
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Dear Ethel,
I have surgery coming up and my daughter who lives far away doesn’t think I should be alone. Should I consider a live-in caregiver? I am not sure how I feel about someone living in my home. Are there things I should know before I consider it?
~ Eleanor
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Dear Eleanor,
After surgery the one thing you need to do is heal. It’s hard to do that if you are worrying about cooking, doing laundry, keeping the house clean, and the more intimate issues of needing to bathe and keep the wound clean. Even when family is there to support you, you may not want them helping you with everything.
Depending on the type of surgery, some providers may recommend you go to a rehab facility or transitional care unit until you are able to live on your own. The question really comes down to – where do you want to recover and heal?
If the answer is home, I would recommend exploring a live-in caregiver. They are a surprisingly affordable alternative to other settings, and you get to remain home in your comfortable surroundings. Live-in caregivers are there for as long as you need them – if you feel you only need a few hours during the day, you can start to wean down caregiving support. With a live-in, you have someone to keep an eye on you at night, so you don’t fall if you are on pain medications and because they cook meals, they can make sure you are eating enough to tolerate those medications. They can also run to the grocery store and get you out of the house when you are feeling better so you can go to book club or to the hair salon (you know, the good stuff!).
The biggest benefit they bring is being the eyes and ears in case there is a change that might signal something is wrong before a bigger problem occurs like an infection or side effect from the surgery.
But I get it. Inviting someone you haven’t met yet into your home is a big consideration. These people are compassionate professionals who are there to support you so that you can stay healthy at home. Often, they provide companionship, ease your mind so you can relax and focus on you, and end up improving your wellbeing in ways you didn’t expect. Live-ins provide a crucial, yet underutilized solution to helping you for as long as you need it.
The choice is up to you but if staying home is what you want, having a live-in is a great option that will ease both your and your daughter’s mind. Regardless of what you choose, I wish you well in your upcoming surgery.
In health,
Ethel
Does spirituality belong in health care? According to a McKinsey Health Institute global survey it matters more than we think. Read on…
The United States may be turning more secular, but the fact remains that older adults are the most faith-affiliated of any demographic age group. That’s in line with what the McKinsey Health Institute’s global survey found. Spiritual health matters to many, regardless of age, country, or religious beliefs.
Spiritualty has a broad meaning, but it comes down to purpose and a sense of connection to something greater. We find in our work with seniors that those conversations are important parts of how health care decisions are made.
Those that lead these conversations are not there to influence you but rather ask the questions that guide you to think about what’s important and to simply sit back and listen. When faced with a chronic or terminal illness, whether to have surgery, or just reflecting on the gratitude of simply getting to age magnificently, people often feel grateful when asked about how this impacts them.
What’s also important is the magnitude of releasing what burdens you. Spiritual guidance can play a big role in helping someone forgive, make their wishes known, or get off their chest something they’ve wanted to say to a loved one before they can begin to enter another phase of aging. The art of simply listening to someone share their fears goes a long way in helping them heal and move forward.
Spirituality offers people so much more than health care realizes and mounting evidence is starting to prove that yes, it does actually play a big role in increasing health and wellbeing when it’s part of someone’s care plan.
“I don’t want to go to the hospital.” Those were Irene’s wishes. When she needed help determining if she should head to the ER for a possible infection, she called her Lifespark COMPLETE team who already knew what she wanted. Instead of heading to the ER, they came to her. Here’s her story…