The 5 Most Important Parts of a Long-term Care Plan

During day-to-day life, it’s easy to believe you’ll be healthy and able to care for yourself until you’re 90. Or maybe it’s something you don’t even think about that much.  

But the uncomfortable reality is that any of us could have a health setback at any moment, especially if you’re nearing retirement age.  

Instead of waiting for something to happen and scrambling to figure out how to get the care you need, it’s a better idea to plan ahead. Even adults in their 40s and 50s should think about advance care planning. Here are the key terms you should be aware of and some ideas for getting started.  

What you should add now to your long-term care plan

Your long-term care plan will be unique to you, but one thing that’s universal? The importance of making a long-term care plan well before you need it.

“The key to long-term care planning is doing it early before there’s a crisis, because when that happens, you’re trying to make decisions about what you’d want for yourself or your family member under duress, which makes it harder,” says Ann Jennerich, MD, a pulmonary and critical care specialist who works at the UW Medicine Cambia Palliative Care Center of Excellence and in the ICUs at Harborview Medical Center. 

She recommends starting to plan when you’re in your 40s or 50s; that doesn’t mean you need to have everything figured out right away, but it’s good to start thinking about it, at least.

Here are some concrete ways to make a plan. 

Ask yourself these four key questions

To get started, these are the four questions Jennerich most wants people to ask themselves and reflect on. They’re also great to ask your parents or older family members whose care you’ll be responsible for coordinating.  

• What do you value most in life?  
• What does quality of life mean to you?
• What is the minimum quality of life you would accept?
• What would you be willing to go through to achieve that quality of life?

For example, does quality of life mean speaking and being able to understand others? Or do you want to still be around your loved ones, even if that communication isn’t there? For minimum quality of life, would you accept being on a ventilator? Or is breathing on your own non-negotiable?  

Know the terminology

It's important to know the terminology often used in advance care planning, plus which documents make sense to include in your plan.

An advance directive is any type of advanced healthcare or end-of-life planning document that can be made as soon as someone turns 18. It outlines what types of care you do and don’t wish to receive in different medical situations. Some common types of advance directives include:  

A living will is a document you’ll write up, typically with a lawyer, that outlines the types of care you would and wouldn’t want to receive in the event that you’re unable to communicate your own wishes. This can include preferences for artificial nutrition, mechanical ventilation or dialysis.

Alone, a living will isn’t usually detailed enough to tell doctors everything they may need to know.  

“If you haven’t had a conversation about it with your next of kin, we’re still going to have a lot of questions for them about what your wishes are,” Jennerich says.  

You can also add formal documentation to your medical record, such as a do not resuscitate (DNR) order, which tells medical professionals if you want them to attempt to bring you back if your heart stops. There’s also a do not intubate (DNI) order, which lets doctors know if you’re OK with being intubated if it’s medically necessary, and a physician order for life-sustaining treatment (POLST), which is more comprehensive and must be signed by an appropriate health care professional.

A durable power of attorney for healthcare is a type of advance directive that grants someone — a friend, a distant relative, a partner you aren’t married to — the ability to make healthcare decisions for you. They’re useful if you want someone other than your legal next of kin to make those decisions on your behalf; otherwise, doctors will automatically contact your legal next of kin.  

Talk with loved ones about your wishes

Once you know your answers to those four questions, communicate your values and wishes to your loved ones, especially your legal next of kin.

This can be awkward; after all, who wants to talk about potential health challenges or even end-of-life care decisions? It doesn’t exactly make for great dinner conversation.  

But ultimately, the importance of the discussion should outweigh any discomfort. It’s OK to acknowledge with your loved ones that it’s a difficult thing to discuss; make it clear to them that you want to do this to help them.

“It's not easy to talk about these things with your loved ones, I know, but it's harder to talk about them with me, in a hospital room,” says Jennerich.

Get your finances in order

You probably already know this, but long-term care isn’t cheap, especially in a place like Seattle with a higher-than-average cost of living. Assisted living can cost anywhere from around $60,000 to upwards of $100,000 a year in the Seattle area, and many nursing homes cost even more. While in-home care is less expensive, even a part-time caregiver can run more than $40,000 annually.  

It’s a common misconception that health insurance covers long-term care, but it usually doesn’t. Many people don’t realize that Medicare does not cover long-term care. However, if you live and work in Washington state, you’re likely already part of the WA Cares Fund, a public, long-term care insurance plan offered by the state government. 

“Everyone should consider long-term care needs in their financial planning,” says Tracy Mroz, PhD, an occupational therapist and professor in the UW School of Medicine’s Department of Rehabilitation Medicine. “Long-term care can be very expensive, especially if you need residential care in an adult family home or nursing home. Start saving early, if possible, but better late than never.”

You have options, from government programs like Medicaid (aka Apple Health here in Washington) to purchasing private long-term care insurance. However, Medicaid is only available to people under a certain income threshold or after you’ve spent your savings on long-term care costs.  

If you want to buy private long-term care insurance, it’s best to sign up early, before you develop any serious medical conditions. You can also choose to contribute pre-tax funds from your paychecks to a Health Savings Account (HSA); the money can be withdrawn tax-free after age 65.  

Do your research and make sure your choice covers the things you want it to cover.  

Plan any adjustments to your home

“Most of us will eventually need some form of temporary or long-term support as we age. Since people usually prefer to stay in their homes, and homes are not often designed with accessibility in mind, you need to plan ahead,” says Mroz.

This is regardless of whether you own or rent, too. Some modifications may be simple, like removing throw rugs to reduce fall risk or reorganizing cabinets so you don’t have to reach or bend as much. But others may require time and money, such as adding a ramp or making your shower more accessible.  

If you’ve already entered your golden years …

Even if you’re already retired or close to it, it’s still not too late to get a plan in place. Mroz recommends consulting with an occupational therapist to learn options for making modifications to your home to increase accessibility and support safe aging in place, and a physical therapist to help you stay active, assess your need for mobility aids and provide strategies to reduce your risk for falls.  

Resources such as the National Council on Aging can also help you make the most of your golden years. The Washington State Department of Health and Human Services has a guide to long-term care resources by county, and you can call Seattle & King County Community Living Connections to get advice. 

A gift to your loved ones

Long-term health and care planning can be overwhelming, but remember, you don’t need to have it all figured out at once. Take some time to think about what matters to you and what you’re comfortable with, then have an open discussion with your family.

“The hard reality is, if you don’t plan, it’s a huge burden on the people who take care of you, and people can feel quite guilty with decisions they make when they don’t know what your wishes are,” Jennerich says. “I like to tell people that talking with loved ones about what you want is a gift.”