Healthcare Directives and Planning
The call came late on a Thursday. The husband of a long married couple had suffered a stroke 2 weeks earlier. He had lost the ability to swallow and the doctor at the hospital had urged surgery to place a feeding tube directly to his stomach before transferring him to a skilled nursing facility, where it was expected he would remain for the rest of his life.
By his wife’s report, she didn’t feel she had been given an option; the doctor simply told them this was the next step in his care so he could be discharged from the hospital. Now in the skilled nursing facility she had time to see the situation more clearly and realized this wasn’t what her husband had told her he wanted if he was in this situation.
This couple had done an advance healthcare directive sometimes known as a living will, more than 10 years before. Although the document wasn’t current, when she pulled it from the filing cabinet his instructions were clear: he didn’t want a feeding tube.
Here’s the rub: Those instructions only applied if he was unable to speak for himself (✓ ) AND he was terminally ill (✗).
Now stable in the skilled nursing facility, but clearly never going swallow or recover meaningfully from the stroke she was distraught. “He would never want to live this way. His living will says so. I want the feeding tube removed.”
Because he wasn’t terminally ill at that point, the facility simply couldn’t honor her request. Had she considered saying no to placing the feeding tube at the time it was suggested, the situation might have unfolded differently. But as it was, he lived his last year in a skilled nursing facility, at significant financial, physical, and emotional cost to both him and his wife. He made a plan, but he didn’t revisit it or have a conversation about it so his wife wasn’t able to make a decision for him at the time she had to make it.
It always seems too early, until it’s too late.
When you consider how much planning goes into bringing a life into the world – ultrasounds, reveal parties, baby showers, birth plans – it’s interesting how little planning we consider for how we want to leave the world. It can be an uncomfortable thought. But the reality is in the last 20 years, especially as critical care technology has advanced the ways that life can be sustained, what seemed straightforward 20 years ago is nuanced now in ways we might never have imagined.
What is advance care planning? Advance care planning goes far beyond a living will (Advance Directive for Healthcare). Advance care planning is a process, first about a conversation, and then about choosing an agent (the person or persons you’re entrusting to carry out that conversation on your behalf) and then re-visiting the conversation periodically.
Here are a few facts from a US Agency for Healthcare Research and Quality study on advance care planning:
- Less than 50 percent of the severely or terminally ill patients studied had an advance directive in their medical record.
- Only 12 percent of patients with an advance directive had received input from their physician in its development.
- Between 65 and 76 percent of physicians whose patients had an advance directive were not aware that it existed.
If you’ve taken the time to execute an Advance Directive for Healthcare, if you haven’t discussed your wishes with your physician, and with your healthcare agent, the time you took to execute this important document may be worthless at the moment it’s needed most.
What can you do?
1) Have the conversation. Advance care planning begins with exploring your wishes for end of life care (where, what treatment, how much) with your family and doctors. Without the conversation there is simply no assurance your wishes will be honored, whatever they may be. Your doctor can help you understand the consequences of the decisions you’re making for yourself, and Medicare has even begun reimbursing doctors for having the conversation.
2) Many people execute an Advance Directive for Healthcare at the same time they write their will, but according to a Gallup survey in 2016 only 44% of us have a will. You don’t need an attorney to execute an Advance Directive for Healthcare. Most states make their form available on line. In Georgia you can access the form from our website Resources page here.
3) An alternative to a state form, is the Five Wishes form. This form is legal as an Advance Directive for Healthcare in 42 of 50 states but is written in natural, rather than formal legal language and includes direction for both medical care, as well as personal, spiritual, and emotional care. There is a $5.00 charge for this form, but if you’d like to see a draft of it, please email or call the office.
4) Youth doesn’t preclude the conversation. Many may remember the lives of Terri Schiavo and Karen Ann Quinlan. Bad things do happen to good people. All adults over 18 can and should share with their loved ones what care they would want if they were unable to speak for themselves and complete an Advance Directive for Healthcare.
5) Be thoughtful about choosing your healthcare agent. An agent must be willing to carry out your wishes. Sometimes this can be hard for family members and a friend is a better choice. It should also be someone who is close enough geographically that they could get to your side quickly. If you are living with a challenging health condition, consider documenting who your healthcare agent is on your phone, a medical alert tag, or in your wallet or purse.
6) If you or a loved one, especially those living alone, are concerned you may experience a healthcare situation where you couldn’t speak for yourself, you might want to discuss a separate document with your physician, Physician Orders for Life Sustaining Care, or POLST. If someone is found unconscious and no direction is available, EMT’s legally must perform aggressive life saving actions. If your wishes are documented in a POLST, and placed prominently in a visible place where you live (on the refrigerator or a door, clearly labeled, is often suggested) EMT’s by law have to follow the physician’s order.
Have the Conversation
April 16-22 is National Healthcare Decision Week. Have the conversation. It always seems too early, until it’s too late. And if you’re uncomfortable, our practice is prepared to help.
*Some details have been changed slightly to protect patient privacy.
Related: You can find both the Georgia Advance Directive for Health Care and the Georgia Consumer Guide for Medical Bills and Debt on our Resources and Links page.