Angel Petropanagos reflects on her experiences asking dialysis outpatients questions about healthcare wishes, values, and beliefs.
I want to tell you about one of the most rewarding ethics projects I’ve been involved with. Over the past few months, I’ve been speaking with dialysis outpatients about what they want, what’s important to them, and what they believe. I’ve been asking them about who they want as their substitute decision-maker if they lose the capacity to consent to treatment, and whether they have or would like to have a living will (or a Power of Attorney for Personal Care). I’ve been asking them if they have any wishes related to receiving Cardio Pulmonary Resuscitation if their heart stops. I’ve also been asking them how they feel about their dialysis treatment. With these types of extremely challenging personal and moral questions I’m getting to know a lot about these patients.
Most of these conversations have happened at the bedside while outpatients have been receiving their dialysis treatment. Often, when I have asked patients these questions, they have smiled at me, paused to reflect, or just laughed. Some patients have told me that they had never thought about their healthcare wishes before. Others have told me that they were glad that someone was finally asking them about their wishes.
These conversations are part of an ethics quality improvement project called ChELO (Checklist to meet Ethical and Legal Obligations). Ethics quality improvement is a novel approach to clinical ethics that aims to improve quality of care. Improved quality of care means giving patients care that they want and can benefit from. It also means not giving patients care that they don’t want or can’t benefit from. Ethics quality improvement does this by creating focused, replicable, and translatable projects that effect measurable changes in hospital processes and knowledge translation. PoET (Prevention of Error-Based Transfers) is another example of an ethics quality improvement project.
ChELO is an ethics consultation process that solicits information from patients about their healthcare wishes, values, and beliefs and provides them with information about the benefits of naming a substitute decision-maker and executing a Power of Attorney for Personal Care. The tools used in this project include a questionnaire (also called the checklist), a values information form, and a brochure that summarizes the legal obligations for substitute decision-makers in Ontario. Patients who want to complete a Power of Attorney for Personal Care are also given a Power of Attorney Kit. Information obtained through this process is recorded in patients’ charts and shared with their social worker or other members of their healthcare team. Most generally, ChELO promotes role clarity around healthcare decision-making and helps ensure that people follow Ontario’s Healthcare Consent Act.
Patients’ responses to ChELO have been overwhelmingly positive. Most patients have enjoyed our discussion and asked me to stay longer to chat. Some patients who have completed ChELO have informed me that they’re working on completing their Power of Attorney or that they’ve started talking to their loved ones about their health-related wishes. Some patients in the dialysis unit have self-referred for ChELO or asked that I speak to their friend, another patient in the unit. According to the social workers in Renal, many patients who have completed ChELO are now eager to participate in events at the hospital or with The Kidney Foundation of Canada.
My conversations with patients have also led to some surprises. I’ve connected some patients with the Spiritual Health Safety Department, identified patients who are interested in organ donation, and helped facilitate employment opportunities for patients.
Doing ChELO has taught me a lot about patient-centred care and it’s presented me with an opportunity to make a positive difference in patients’ lives.
As I tell patients, ChELO does (at least) three things. First, it ensures that patients and their healthcare providers know the name and contact information for patients’ legally correct substitute decision-makers. In this way, members of the healthcare team can be made aware of patients’ health-related wishes. This information should guide medical decision-making if (when) patients lose their capacity to consent to treatment.
Second, ChELO can help healthcare providers get to know more about their patients. This can support patient-centred care. As one patient told me during her ChELO consultation, our discussion made her feel important; it made her feel like a “somebody.”
Third, ChELO prompts patients to consider their life and illness and to discuss these things with their loved ones. It creates opportunities for patients to reflect on what they value and decide who they want as substitute decision-makers. As a patient completing the ChELO checklist has told me, “ChELO isn’t really about the paperwork, it’s about the conversations.”
Ultimately, ChELO is about helping to create a healthcare context where patients’ wishes, values, and beliefs are known and respected.