Hello I am looking forward to being of assistance if possible. There are a number of answers to this question.

1. The first is the importance in Ontario of having a "DNR Confirmation" form (a provincial form) completed. This is very important to do if there is any possibility that the person may be transferred by paramedics. In the absence of this form the paramedics are obliged to do CPR.

2. It is good to keep in mind that the language is shifting as many institutions and agencies are shifting away from DNR per se. There is a risk with DNR that people don't receive the extent of services they should as people with DNR are sometimes dismissed as "they are DNR." Always bearing in mind that people who choose not to be resuscitated may want active curative treatment up to that point. Also we have an obligation to ensure the full range of comfort measures from pain management to spiritual, psychosocial and financial supports are offered.

3. In Ontario we must keep in mind the importance of the consent process. Even though  a person has recorded their wishes "DNR" consent is still required, either by the person if capable or by their substitute decision maker (SDM). To put it another way the paper is not consent - but does give direction if the expressed wish is applicable to the circumstance.

4. Wishes have to be interpreted by the SDM so it is important that discussions have taken place by the person and their SDM. For example a person may say they do not wish a feeding tube. This may be applicable to if they had end stage dementia but not a stroke. They may have said DNR but what if they had a problem that was temporary and could be responded to but requires resuscitation and temporary admission to ICU.

5. In this context it is very important to have discussions about a person's values not only about possible interventions. Knowing values can guide decision making which may lead to a choice re resuscitation status.

6. Given the need to interpret wishes who is the SDM is more important than the recorded wishes. If there is any possibility that a person in the hierarchy of decision makers (section 20 of the Health Care Consent Act) would not act according to the person's wishes or values they should be encouraged to appoint an attorney for care (POA).

7. As for informing people about expressed wishes and documents. A number of the western provinces have plastic sleeves which patients are given to place their  documents so they can carry the documents along their points of care. At my hospital we have a "blue sleeve" in which an advance care plan, POA documents and a copy of our goals of care form, which reflects a person's resuscitation status can be placed. the purpose of giving a copy of the goals of care form is to facilitate communication that there has been previous discussions about a person's resuscitation wishes. This transparent process of giving a copy is not done to avoid consent  the next time a person is in a setting where resuscitation will be inquired about. It is given with the intent to make the next conversation easier for a health care provider. For example the MD reading the form could say " I see last time you were in hospital you were full code is that still true today...." From that the consent to a treatment plan can be facilitated.

8. As with many health care documents in the home setting the fridge seems to be the location where many people either keep their documents or have an indication where they are. Some jurisdictions have a fridge magnet stating where information is. Sometimes information is actually in the fridge (freezer). It is a very convenient place for paramedics and others to find.

9. I am not sure if this is done but at one point I was told that in the Yukon POAs and advance care plans could be registered so that the file could be accessed when it was needed. As a longer term plan I believe registering POA forms and advance care plans could be very helpful.

10. Paramedics in some areas have a magnet that go on a door frame (for increased privacy) to alert them to people who have health information they may need to see when they come into the home and if a transfer to hospital is necessary take with them. This is being done for clients who require frequent assistance.

Not sure that I answered your question well but hope I have given you some ideas that are worth considering. Please feel free to contact me with further questions or thoughts.

Kevin - perhaps if you restructure your original question. We don't use surveys in focus groups - so I doubt that you will find one - especially for such a specialised topic such as DNR orders. What you might look for instead is examples where researchers have used semi-structured questionnaires for related areas - although, often, those that report their focus group findings don't usually publish the exact detail of their questionnaires. However, you can approach the corresponding author and request an original copy. 

The first thing I would want to know is who the participants will be for your focus groups. If you are planning on using ordinary citizens, I would suggest reconsidering that choice because they will have very little knowledge in this area, and will basically have to make it up as they go along.

Instead, I hope you are planning to work with people who have serious chronic illnesses or other reasons to have thought seriously about the issues involved in creating a DNR. I personally have done quite a bit of work with older research participants, and my experience is that most of them have considered issues related to end of life care, and are willing to talk about it. In other words, this is not a "taboo" topic for those to whom it is relevant.

Bob Parke - your insights (and time) are valued. Thank you. I will re-review.

Dean Whitehead - I have modified the question as suggested. Thank you. I have yet to conduct a thorough literature review, but past work related to gerontology hints there may be little out there.

David Morgan - Interesting point. Thank you. There has been expressed interest of this initiative at two palliative care / hospice facilities. Perhaps it is best to gain participants from there (including their family members). I am in the exploratory stage at this point. A hospital was on board but has recently decided to drop out.

Thank you all for your input. I am biased, as I think with further research this could lead to a contribution to knowledge.

Further research is of value and very timely given many initiatives from Ontario Medical Association, Canadian Medical Association and numerous publications addressing advance care planning. My cautionary note is to be mindful of language as we mover away from DNR to means of expressing wishes and communicating wishes so that substitute decision makers will make decisions based on the person's values when they cannot make their own treatment decisions. I had a discussion recently with a family who did not want a DNR for their loved one as they were afraid that it would be interpreted as "do not respond." This is a reasonable and bright family who understood the illness trajectory of their family member but were afraid of inferior care. We no longer use DNR since 2012 and were able to address their concern.

Another possible connection or resource about advance care planning and identifying people with DNR are Health Links. I know a Health Link which is part of a LHIN has advance care planning as part of their mandate. They had some community participation in their work.

A few years ago I had the privilege of writing an essay with a geriatrician in Healthcare Quarterly about increasing the success of advance care planning (ACP) by tying it to chronic disease management. More recently I would add tying ACP to family health teams. In family health teams and in clinics which help people manage chronic diseases relationships are built over time along with trust. Also there is an illness trajectory which can make planning easier as the person has a sense what might happen to them such as with congestive heart failure or COPD - leading causes of hospital admissions and re-admissions. The teams in these settings can help patients locate their wishes in a place that is easy to find when needed.

In a general way creating and identifying ACP with resuscitation wishes should be done upstream before the hospital. Hence it might be good to review what is being done by community palliative care providers, chronic care clinics, family health teams and even CCACs. When CCACs do home visits do they have a record of their client's wishes? As mentioned before if wishes are known in he community a DNR Confirmation form will be in the home.

Lastly, Speak Up Canada is worth reviewing their many initiatives evident on their website.

The most common format for a semi-structured questionnaire ("interview guide") is a funnel, where you begin with one or two broad questions to hear the participants' perspectives, and then move on to three or four narrower, more researcher-driven questions. The final question is usually something fairly specific that serves as a "wrap-up" and gives the group a sense of closure for the interview.

If you use palliative care patients and their families, they will be highly aware of end of life issues, so your more general questions should come from that realm. For example, you might just ask them if them if they have heard about DNR requests and what they think about the whole idea of Do No Resuscitate. The idea is to spark a free flowing, open-ended discussion on something that they are both familiar with and interested in.

For one of the more targeted question, you might pass around a copy of the "DNR Confirmation" that Bob mentioned and get their reactions to the issues it raises.

As a final wrap-up, you might ask something like: "I'd like you each to give me one piece of advice that I should pass on to [decision making group] about DNRs -- if you wanted to make your thoughts heard, what would you say?"

Thank you all for your insights. There is much to reflect on over the Christmas holidays. Given its complexity and fluidity, any research on the topic can by no means be thought to be definitive.