Advance directive: The emotional and practical challenges of end-of-life planning

Do you imagine what the end of your life will be like? Where you’ll be and who will be with you?

What if you could live your final days on your own terms? Here’s a fact – you can’t accurately predict how you’ll exit this life.

Here’s another fact – there are steps you can take to prepare yourself and your loved ones for your eventual passing.

One important step is creating an advance directive, a set of instructions that reflects your wishes for receiving health care at the end of your life. Read more about what an advance directive is and why you need one in this SeaCare blog.

Here’s a personal account of my introduction to advance directives. It was an event that changed my outlook. 

I learned about advance care planning some years ago through my workplace, a community health center in northwest Washington. It was a seminar where advocates for the process explained the nuts and bolts of creating an advance directive.

The presentation included perspectives of two former ICU nurses with many years’ experience, who later worked in palliative care. They gave a healthcare provider’s insight, backed by facts and figures, into quality of life issues many face at the end of their lives. They spoke of elderly patients who had opted for aggressive medical intervention, such as intubation (artificial ventilators), for the purpose of keeping them alive. And the sometimes devastating effects of those choices.

The observations from the nurses were valuable. And frankly, very sobering.

As ICU nurses they were instructed to prolong lives at any cost. When they later began working in palliative care settings, it became their role to provide comfort care when the prospects for recovery were bleak.

They spoke with authority from both points of view.

I’ll never forget what one said about her decision to embrace palliative care. While her early training was to do everything possible to save a life, she came to recognize there were many times the patient’s death was made more traumatic as a result. She witnessed cases where life-saving technology did not help, but rather made things worse.

A 2015 Yale University study of elderly adults before and after an ICU stay demonstrated that many patients were likely to see a steep decline in function or to die within a year, depending on how disabled they were before a critical illness.

Without question, I understood that making an advance directive was a responsible step to take for my family and myself. But it took me some time to absorb what I’d learned.

Clearly, the process required thoughtful decision-making that ultimately would involve my loved ones. That meant thoroughly examining my values. And then having sensitive conversations.

I went on to create my own advance directive, fondly calling it my exit strategy because that reminds me that I have choices. And that I can enlist my loved ones to help see my life through on my terms.

I hope you find the following observations and resources helpful for your own exit strategy. 

How do you complete an advance directive? A step-by-step introduction

It’s never too early to create an advance directive, and as long as you can still speak for yourself it’s never too late. The key is to have this documentation in place before you need it – that is, before you become incapacitated and not able to make your own decisions.

Find an advance directive form and read through it. The End of Life Washington organization has created a single document that fulfills our state’s legal requirements for your advance directive. Find the template and additional information you need HERE. This template serves as an excellent guide for the process, so download a copy as your first step.

Learn what must be included in your advance directive. These items must be in your document – each is described in detail at the End of Life Washington site:

• The name and contact information of your health care agent.
• The authority you grant your health care agent.
• Answers to specific questions about your wishes for care if you become unable to speak for yourself.
• Names and signatures of two witnesses who watch you sign your document. Make sure you learn about who is and is not eligible to serve as a witness.

Learn what’s advisable to include in your advance directive. There are optional items that add detail to your preferences. They may help assure your wishes are carried out. These include:

• An alternate healthcare agent in the event your primary agent cannot serve.
• A notary public’s signature and seal. Your document is legal in Washington without it, but it can lend authority to your preferences and help to eliminate doubt.
• Additional detail about procedures you wish to have or to avoid, such as life-support measures.
• Information about your personal values and what makes life worth living for you. This might include your feelings about being kept alive in a comatose state for the rest of your life, for example.
• Your wishes for procedures following death, such as your consent to an autopsy, organ and tissue donation, and disposition of your remains.

Think about what’s important to you. See the Important Conversations section below.

Finally, complete your advance directive form and distribute copies. The following people should have a copy of your document:

• Your health care agent and alternate.
• Your primary care doctor. Your document will become part of your medical record.
• Any family members or friends who need to know your preferences.
• Your personal file – keep the original copy.
  
  

Important conversations to have while creating your advance directive

“It makes no sense to scoop people out of the river when we could go upstream and prevent them from falling in in the first place. The ICU is not the place for these conversations to begin, and yet that is where they are often happening, if they do at all.” Jessica Nutik Zitter, M.D.

Communicating with the important players in your life is what makes your advance care planning process effective. Your health care provider or family can read what you’ve written into your advance directive, but they’re more likely to understand your choices if you take the time to explain why you’ve made them.  Ideally, these conversations take place over a span of years, especially as your circumstances change.

Your advance directive should reflect your most current thinking about end-of-life care. Plan to revise it if you experience major shifts in your life circumstances – your health, your location, or your marital status.

Start by talking to yourself

This is your opportunity to give serious thought to what’s most important to you. What do you value? It’s time to review and use your findings to create your advance directive.

Here’s an icebreaker to use on yourself. Complete this sentence – What matters most to me as I reach the end of my life is ________________. Take some time to ponder what you need to make your life worth living, such as being mobile, caring for yourself, or recognizing your loved ones.

Do you feel as if you understand the current state of your health?

Think about what a good day is like for you. Maybe being outside is important. Maybe you like to cook. You might have hobbies – gardening, sewing, reading, or making art or music. You might like to stay active by walking, dancing, or traveling. Maybe you enjoy getting together with friends or neighbors.

What are you most worried about? Many older adults say the primary concern of their final days is fear of burdening their loved ones by becoming completely dependent on them. Concerns about the cost of care are common. Many worry about ending up in a nursing home or intensive care unit when they’d rather be at home.

Find more questions to ask yourself as you do end-of-life planning HERE.

Talk to your health care provider

Make an appointment to talk specifically about your end-of-life care so that your provider has the time to listen and understand what’s important to you. Your provider can bill Medicare for this.

You may wish to have your health care agent with you. This could be the first of more conversations for sharing information and asking questions. Find a conversation guide with more ideas HERE. You might discuss things like:

• How your provider expects your chronic condition (if you have one) might progress and affect your quality of life over the next few years.
• Where you’d like to be at the end of your life – in a healthcare facility, for example, or at home.
• Your provider’s opinion of aggressive life-saving measures like intubation and how they could impact your remaining quality of life.
• The financial reality of care you might need.

The Affordable Care Act eased the way for patients to talk with their doctors about end-of-life planning.  Medicare finally began reimbursing healthcare providers for these conversations in January 2016, after several years of opposition from politicians that didn’t understand the value of end-of-life discussions. This milestone was significant because it meant doctors could spend more time helping their older adult patients understand their options and the importance of having an advance directive.

Talk to your health care agent and loved ones

Talking about your end-of-life healthcare wishes with those closest to you might be the most difficult conversations of all.

Here are some tips.

Before you share your proposal with loved ones, remember that you’re creating an advance directive with not only your own, but also their well-being in mind. Having clear guidance about your end-of-life wishes will give them confidence that they’re acting on your behalf and supporting you during your final transition.

When you talk with the person you want as your health care agent, you might begin by asking for their help. Assure them, if possible, that your health is currently good and that you think of the advance care planning process as a type of insurance policy. Let them know you’re turning to them out of respect and trust.

With your health care agent, be sure you cover potential challenges they may face and ask them to be honest about whether they feel up to the task. 

• Are they willing to be your voice in the face of a difficult decision? 
• Do they feel they understand why you have made certain choices? 
• Can they confidently advocate for your choices if someone else voices disagreement?

Whether you’re talking with your health care agent or another friend or loved one, allow room for a meaningful exchange. They may have questions or concerns of their own. Once you bring them into the conversation it’s not just your subject, it becomes theirs as well.

Take time with these conversations and don’t try to cover everything in one sitting. The topic of how your life ends can be intense, and your loved one needs time to adjust in order to think about it clearly.

Bring up mutual experiences or people you both know when discussing your ideas. “Remember what happened when Aunt Ruth had her stroke and landed in the ICU on a ventilator and feeding tube? Uncle Carl wouldn’t let her go. She never regained consciousness, but she was there a long time before she died. I can’t imagine she would have wanted it that way.”

If you often approach life situations with humor, by all means inject some levity into your end-of-life conversations. If you treat the topic in a matter-of-fact manner, your loved ones will feel more at ease.

Learn more about having meaningful discussions with this conversation starter guide.

What to read for more insight on the value of an advance directive

The Conversation Project is a public engagement initiative created to encourage people to talk about their end-of-life care wishes.  They promote conversations that “…begin at the kitchen table – not in the intensive care unit…”. The site lists some excellent books to read for information and inspiration. Here are three I’ve read and recommend. Check the link for more suggestions.

All are available through the King County and Seattle Public Library systems.

The Art of Dying Well: A Practical Guide to a Good End of Life – Katy Butler. The author discusses thriving in one’s later years and includes insight into navigating a disjointed medical system. Personal experience with caregiving and dealing with her father’s dementia adds depth to her account.

Extreme Measures: Finding a Better Path to the End of Life – Jessica Nutik Zitter, M.D. Zitter’s experience being trained as an ICU doctor and embracing a palliative care model makes for compelling reading. She condemns what she describes as “the end-of-life conveyor belt” that elderly patients are often subjected to. She presents a powerful case for having an advance directive.

A Beginner’s Guide to the End: Practical Advice for Living Life and Facing Death – BJ Miller, M.D. and Shoshana Berger. This is a good introductory guide, written with humor and practical advice about planning, documentation, and purposeful living. Both authors speak from personal experience, one involving near death and the other involving the heartbreaking frustration of managing a parent’s care with inadequate resources.

The staff at SeaCare understands the importance of planning in the final chapter of life. Ask us about in-home care and support for you and your loved ones.

Katie Wright writes about aging and senior wellness from Bellingham, WA. You can read more about her here.

References:

https://deathwithdignity.org/advance-directive/

https://endoflifewa.org/tools-for-planning/advance-directives/

https://theconversationproject.org/