During a visit to the emergency department, there are several opportunities to bring up two important components of ACP -- identification of the right SDM and exploring a person's illness understanding if they have a serious illness.

1. Explore a person's SDM

Ensuring people know about their SDM is a component any emergency department clinician can ask about.

2. Assess and improve illness understanding

In the emergency department, we have a good opportunity to learn if someone understands their illness or has major gaps in understanding. We may not have time to improve their understanding, but we can note it and encourage the person to follow-up and ask for more information.

3. Communicate with other healthcare clinicians

Include in your notes any information you gained or provided about ACP -- this allows other clinicians to follow-up and carry on the discussion

Near the end of a hospital admission, is a good opportunity to explore ACP.

• Review the reasons for the admission - this is an opportunity to improve illness understanding
• Provide education around illness understanding if necessary
• Ensure the correct SDM was identified during the admission
• Introduce ACP and provide resources
• Encourage communication between a person and their SDM

For example, a person with advanced dementia who was admitted with aspiration pneumonia. Discharge is a good time to review the course of the hospitalization with the SDM and ensure that they have a good understanding of what to expect in the future. Explain that aspiration is due to the underlying dementia and the lack of the brain's ability to coordinate swallowing. Explain that this is likely to recur and begin to explore goals and values. Document the person's illness understanding, any information you gave them and any goals, values, wishes identified and make sure it is shared with other care providers in the person's circle of care.

For people with early to late chronic progressive illness, the focus is on how the person understands his or her own illness. 

A person's response may uncover an opportunity to address misconceptions or to add in information they are lacking.

What additional information would be important or meaningful to the patient?

• For example, what can be expected in the future with their illness or what treatment options are likely to be offered in the future, etc. 

Does the person like to know big picture concepts or many details?

•  How should information be delivered?
•  The patient may also tell you that he or she does not want information or ask that you tell someone else the information. Patients have this right and it is important to document this.
•  Assessing the patient’s understanding of medical language and probabilities (e.g. CPR survival rate) will help guide how future information will be provided.

Based on the above, you can:

• Provide the necessary information to the patient and their SDM(s).
•  Help identity the healthcare provider who is best suited to answer outstanding questions.
•  Help formulate questions to ask that healthcare provider based on what you have learned is considered to be important.

If providing clinical information is not within your professional scope, you might consider delaying the remainder of the ACP conversation as a patient can more effectively reflect on wishes, values and beliefs when it is based on having an accurate illness understanding. However there will be times when you should carry on in the conversation. 

For example:
A patient on dialysis may truly believe their kidney condition is curable and that the purpose of dialysis is to heal their kidneys. Accurate information may or may not have been provided in the past. Discretion of the clinician should be used to determine if it is appropriate to continue the ACP conversation. If the conversation proceeds, what surfaces when discussing subsequent items may give helpful insights as to how the clinician might structure future ACP conversations. For example, if a patient identifies one of their Values as “being well informed”, or identifying certain Worries & Fears can be useful to the clinician if revisiting Understanding. 

You want to help a person explore the essential components of what he or she considers a “good life”.

Maintain focus on the person's perspective (not the SDM or anyone else’s).

• The importance and even the definition of a value may be highly individualized.
• When talking to someone about their values, it’s important to help them express what the value means to them.
  
• Avoid focusing on specific abilities such as sight, mobility etc. In general, people have a large capacity for adaptation to adverse situations and it is difficult for a patient to accurately predict the impact on their quality of life. For example, rather than “the ability to speak”, an essential component of quality of life could be “communicating one’s thoughts or ideas”. This can be accomplished using means other than verbal.

If the patient has difficulty answering this question:

• Ask the patient to think about health decisions they have made in the past
  
• Explore how the patient made the decision(s) and how values or beliefs affected the decision-making process
  

Examples of personal values related to healthcare:

Independence, Spirituality, Dignity, Courage, Loyalty, Clear-mindedness, Happiness, Wellness, Longevity, Family

It might be helpful for the patient to consider how the information will be used in the future. E.g. consider an SDM who has to decide if she should consent or refuse the insertion and use of a feeding tube. The purpose of the ACP is not to arrive at a preference about feeding tubes, but to consider how values can guide future decision-making in different contexts.

Scenario A: You have a temporary swallowing problem but converse easily with those around you and take considerable enjoyment from daily life.
Scenario B: You have lost the ability to communicate, don’t recognize others and are not very interested in eating.

•  Although the treatment decision is the same, the context and quality of life considerations are very different.
• If a patient places high value on being able to interact and communicate with others, explore how decisions might be made in each of the above two scenarios.
• What if the patient considers staying alive at all costs as the most important value?
• What if dignity is the most important value? How would the way dignity is thought of affect the response?
  

• Worries and/or fears may be related to specific symptom scenarios or emotional / psychosocial fears.
• Some people worry about being in pain, struggling to breathe or being a burden on others. Talking about your worries and fears with your SDM(s) and your healthcare provider can be helpful: • To make sure you have the right information as this may lessen your fears • To come up with a plan to try and avoid these situations or make them better for you • To give important information to your SDM(s) and healthcare provider about your values and things that you would like to prevent from happening
• This information may give SDM(s) guidance on what might be important to avoid, prevent or aggressively manage.
• This item may provide an opportunity to identify worries or fears that can be addressed in the present through reassurance or information exchange.

E.g: a patient may have a fear of suffocating. Reassurance that breathlessness can be well managed may mitigate this fear and impact future decisions about BiPap or other respiratory interventions.

• Based on the wording of the item, it may be the first time that dying or end-of-life enters as a concrete element of the ACP conversation.
• Clinicians may need to manage a patient’s curiosity or distress about why end-of-life is being addressed.
• Reiterating the purpose of ACP and normalizing it as something all of us must consider is likely to be the most effective and efficient response to curiosity or distress that might surface.

• Attempt to clarify what a patient is willing to go through for the possibility of gaining more of what he or she considers to be important (e.g. potentially extending life).
• A patient might say that a greatly diminished quality of life would be acceptable for even a remote chance of extending life.
• A patient might approach this question by listing things they consider essential to their quality of life (things they are unwilling to ‘trade off’), for example independence or ability to communicate with family. 
• Clinicians may want to remind the patient of the response they gave during the discussion of Values, Beliefs and Quality of Life.
• Explore what is valued that the patient might choose to “trade” when the potential for extending life is the alternative.
• SDM(s) may have additional questions at this point to gain a greater understanding of the patient’s perspective.

This question is more relevant for patients with advanced serious illness.

• Those who have no illness or at the early stages of illness may not be able to discuss.
• The patient may express wishes related to care setting or treatments, religious ceremonies, specific music, having books read to them etc.
• If appropriate for your professional scope, this might also be an opportunity to explore with the patient and their SDM(s) what to expect in the last stages of life.

Priya's daughters had never talked to Priya about what she would value and look to if she knew she was at end of life. They have some ideas as Priya cared for her brother when he was sick. Priya did say that certain ceremonies were really important to her; and they watched her make choices for her brother when he could no longer make choices.