No one wants to talk about it, but it’s really just a matter of time when you, or someone you love, has a health crisis. We’re human after all. And the most loving thing we can do for our families is plan for it – especially when it’s not expected.
Planning for that crisis starts with two simple questions:
- Who do you want to make your medical decisions if you are unable to speak for yourself?
- What healthcare would you want to receive if you had a severe, permanent brain injury or an irreversible, debilitating condition?
Can you answer those right now? Could you answer it for family members close to you? Do you have it all in writing?
What happens when no one asks the difficult questions
The failure to do that planning before her mother slipped into advanced liver failure is what propelled Katie Kirkley to change careers and become the program coordinator for Advance Care Planning at Community Medical Centers
“It’s a passion for me because my mom didn’t have advance care planning,” Kirkley explained.
“My mother lingered for 10 days in ICU while I gave the go-ahead for resuscitations, dialysis, lab work, intubation, nutrition and other things. On the tenth day my brother and I surrendered to the evidence of the lab work and the lost reality of a transplant, and we gave our mother back to the Lord.”
Then for two years afterwards, Kirkley second-guessed those decisions in the ICU.
While she had moved her mother into her house, attended doctor’s appointments with her mother and become an expert on liver failure, she explained, “None of it prepared me for the moment that mattered most—knowing what my mother truly wanted in that situation. My grief was compounded by second guessing, self-blame, and uncertainty and I spent a long time wondering and wandering through my grief, replaying her demise and my role in it.”
Kirkley’s mother who was in her mid-60s had been expecting to eventually get a liver transplant. But a rare and unexpected reaction to a routine procedure left her unable to speak, completely helpless and in distress, said Kirkley. Everyone looked to Kirkley to know what to do and say.
Five good reasons to make an Advance Care Plan
Kirkley compared an Advance Care Plan to having healthcare insurance or car insurance: “You don’t pay for health insurance expecting to have a serious disease or injury, but because we know we’re human and we’re bound to get sick at some point. Same with car insurance. We buy it because we’re human and accidents can happen.
“Think of advance care planning like having healthcare insurance for your loved ones,” Kirkley added. And here’s all the reasons you should have this conversation soon and with a professional facilitator:
- You’ll get what you want when you can’t speak for yourself, including any religious customs
- You save your family from second-guessing after you’re gone
- You can avoid any fighting over decisions and creating arguements between loved ones
- Hospitals and your doctors get a roadmap of your wishes to follow
- You choose what happens to your body afterwards – organ donation, donating for research, etc.
- It offers peace of mind since you never know what tomorrow might bring
It’s not just about dying. Advance Care Planning is also about living.
There are a few more things to consider while creating an Advance Care Plan.
Ask yourself what makes a great day for you.
Are there must-haves for your quality of life? If you can’t run a 5K race, would life still be enjoyable if you can take walks or just sit outside in the sunshine? What about being able to taste food? Is talking with your family important, or would you be okay with being able to communicate in another way?
Figure out what cultural, religious or spiritual beliefs you have that might impact what you want from your healthcare.
Some patients want their bed facing a certain way or certain songs or last rites at the end of their life. For others, there’s special foods or spiritual practices that give them comfort.
Many people stop and talk with their spiritual leader before proceeding on this point. Some religions prohibit blood transfusions, others have restrictions on damaging the body and other religious traditions require attention to the soul for the body to be healed.
Revisit and review your plan regularly, especially if you have any of these “five Ds”:
- Decade – 10 years have passed since you completed your plan
- Death of a loved one – especially your designated decision maker
- Diagnosis – of a chronic or terminal disease that could lead to the use of your care plan
- Decline – of your health
- Divorce – especially if your designated decision maker or your back up is your now ex-spouse
After you have a plan, what’s next?
Make sure your plan is notarized to be considered a legal, binding document. Then share it – with everyone. Give it to your primary care physician and any specialists you see regularly and make sure the Advance Care Plan is scanned and included in your electronic medical record or MyChart
Then communicate or hand copies to anyone in your family who might be involved or you think could be a roadblock in carrying out your healthcare wishes.
Kirkley told her own cautionary tale on this point: “My mom signed over power of attorney to me but didn’t tell my brother. In the ICU everyone was asking me questions about her medical care and my brother was looking at me wondering what was going on because he’s 5 years older. There was a moment of a real power struggle there. It took us two years to get over that. Our relationship suffered a terrible blow.”
Then make sure it’s in a place where others can find it easily. A locked box that no one has the key to is not a good place.