Checklist for End of Life Care

It is a statement of fact, repeated in study after study -- errors in end-of-life care continue to be made. Such is the timeless truth of the statement that it almost goes without saying. As long as attempts are made to save lives, errors will continue, and attempts to eliminate them will continue. It would be naive to think that at some point errors will cease, but the worst error would be to stop trying.

Also clear, in study after study, is that poor communication is behind many of the errors. As the Community Ethics Committee proceeds in its study of intractable disputes in end-of-life care, we have wondered whether a checklist might not be helpful in making sure the basics are covered.

And so I was excited to discover that such a checklist exists, and is from some of Canada’s leading experts in end-of-life dispute resolution. The checklist is published in the current edition of Healthcare Quarterly (http://www.longwoods.com/content/22652) with the article “Checklist to Meet Ethical and Legal Obligations to Critically Ill Patients at the End of Life.”

The authors are bioethicists Robert W. Sibbald and Paula Chidwick, attorney Mark Handelman, and physician Andrew B. Cooper. All have interest and expertise in Ontario’s Consent and Capacity Board, which I’ve come to believe is the best model available for resolving the most intractable disputes. (More on the CCB in a later blog.)

“While excellent communication is desirable for any end-of-life conversation, healthcare professionals must first and foremost meet their basic ethical and legal obligations to critically ill  patients,” the authors write. “The use of a checklist for managing these obligations in end-of-life scenarios offers several benefits. The checklist we propose can minimize common mistakes and errors when engaging in end-of-life care by ensuring that care is patient centred, process oriented and values driven. Use of the checklist ensures that the team takes direction from the correct (surrogate decision maker); that the SDM consents in accordance with the legislative standards; that decision-making is patient centred by adhering to prior expressed wishes, beliefs and values of the patient; and that there is respect for the professional integrity of physicians proposing treatment plans. Finally, the checklist can reduce uncertainty regarding what constitutes an end-of-life conversation, and it provides clear steps for managing conversations at the end of life.”

The authors say following the checklist will minimize common errors at the end of life, ensure patient-centered decision-making by respecting wishes and values, respect professional integrity and clinical judgment, ensure that the medical team meets ethical and legal obligations to patients, and clarify what constitutes an end-of-life conversation. 

Though some of this language is specific to Ontario and its established law and process, the checklist has much to inform communication elsewhere. Here is the checklist for meeting ethical and legal obligations at the end of life. 

Ask the capable patient about wishes and beliefs: 

1. “What is your understanding of your condition?” 
2. “What worries you about your situation?” 
3. “How do you make decisions in your family?”
4. “What is important to you right now when making decisions?”  
5. If the patient is not capable, document this before proceeding to step 2. 

Identify the legally correct SDM: 

1. See hierarchy of decision-makers (from Ontario’s Health Care Consent Act). 
2. Document decision-maker(s) 

Ask questions of the SDM: 

1. “Is there a living will?” 
2. “Do you know your role?” (e.g., to act on prior expressed wishes or best interests)
3. “ Do you know what the patient would have wanted in this situation and what was important to this person?” (share beliefs or stories)
4. Document what you learn.  

If there is no prior applicable wish, inform the SDM about “best interests”:

1. “ If there are no prior expressed wishes, we then have to consider what is in the best interests of the patient – this means we can propose treatments that will change or improve the condition of the patient for the better, while taking into account this individual’s goals, values and beliefs.” 

Propose an indicated treatment plan:

1. “We are going to do what will benefit your loved one, and we will continue the treatments that are indicated and in [his/ her] best interests.”
2. OR 
3. “ [Patient’s name] is really sick. We will provide treatment that improves or changes [his/her] condition for the better, so that leaves us with the following options: palliative care, comfort care …”
4. “When a treatment is no longer indicated, we will let you know that we are no longer providing it.”

If NO consent is obtained, state the following: 

1. “It is a challenge when we cannot reach agreement; however, we have a resource that can help us, called the Consent and Capacity Board. It is a neutral third party that will come into the hospital and listen to both sides of the story. The board will then decide what is in the best interests of the patient.”
2. “The patient would be appointed a lawyer, and the physician may have a lawyer as well. You personally are entitled to have one also (refer to www.ccboard.on.ca).” 
3. Document that you have explained the role of CCB. Give the family time to ask questions.