Dignity of Risk Workshop Report: Saskatoon 2014 1
Report from Dignity of Risk Workshop, University of Saskatoon, April 2014 Facilitators: Cheryl Cook, Thought Cloud Consulting Kathryn Hominick, Geriatric Medicine Research, Capital Health/Dalhousie University. Report Author: Cheryl Cook, Thought Cloud Consulting 2
CONTENTS BACKGROUND...4 THE WORKSHOP...4 THE DIGNITY OF RISK...4 Morning Sessions...5 How do we view the old?...5 Unintended Consequences of a Safety Oriented Culture of Care....5 The impact of clinical experiences...5 Brain Writing: Capacity and Decision Making...6 Considering an older patient whose cognitive abilities are in question: what are some tools or strategies that you could employ for learning about the values, goals and wishes of this patient?...6 Considering an older patient whose cognitive abilities are in question: how can health care professionals ensure that the patients goals, values and wishes stay present in conversations with the family and health care team?...7 Name some things that are external to our health care processes and PRACTICES THAT could impact a person s capacity (e.g. delirium, education level)...7 Describe some ways in which our own processes, practices and behaviors can impact a person s capacity to make a given decision...8 Afternoon Sessions...9 What is the Role of the Patient and Family?...9 How can care providers help patients and families to understand risk?...9 How can we support families comfort level with risk?...10 Story Telling Sessions...10 3
BACKGROUND The Dignity of Risk is the right to take risks while experiencing life, and the right to fail in taking those risks. Supporting an older person s right to take risks when engaging in life can be a challenge within our safety- oriented health care system and culture. A group of researchers and clinicians from Geriatrics at the Capital District Health Authority in Halifax, NS has been exploring this issue with regard to care of older adults. This one day workshop is designed to delve into issues of the Dignity of Risk within the culture of care. Using participatory methods that harness the knowledge of the participants themselves, we looked at factors, which can shape risk perceptions, and well as concepts such as the Dignity of Risk and Duty of Care. We allowed participants to consider how these perceptions can impact our practice, our communication with the patient and their family, the patient s autonomy, and ultimately the patient s experience in our system. THE WORKSHOP These workshops use participatory methods such as World Café and Collective Story Telling to allow participants to explore topics that matter to them in an involved and interactive manner. This is supplemented with short presentations around some of the key concepts. While the ideal situation would allow participants 2-3 days to explore these ideas, the workshop is structured over one day, to reflect the scheduling realties of having frontline health care personnel participate. THE DIGNITY OF RISK The central concept explored in these workshops, the Dignity of Risk is the right for people to take risks while engaging in life experiences, and the right to fail when taking these risks. Our interest is specifically in how this applies to the care of older adults, and how this concept might be balanced with the health care professional s duty of care to the older person. 4
MORNING SESSIONS HOW DO WE VIEW THE OLD? Working World Café style in small groups of four, participants were asked to consider how society views people over the age of 80 and how these views might impact their autonomy.. While participants mentioned some positives (much to contribute, worthy of respect) the focus was generally on the negative stereotypes of the older adult - that they are seen as rigid, lacking independence, feeble minded, stubborn, lonely and have suffered many losses including personal, emotional and in terms of their function. The impact of these stereotypes was described as including increasing dependence on others, being told what to do, having the value and beliefs of others imposed on them, losing the right to make decisions, and being treated much like children. UNINTENDED CONSEQUENCES OF A SAFETY ORIENTED CULTURE OF CARE. Caring for older adults often means a heavy focus on their physical safety. We asked participants to work in small groups to discuss what they thought were some of the unintended consequences of this focus on safety. The patient was often felt to suffer a loss of autonomy and independence in the name of safety. Participants described a variety of factors that might encourage this focus, including a fear of litigation for not keeping someone safe. The impact even of this loss of autonomy for the patient was described as stopping quality of life or creating a culture of under- reporting by the patient/client for fear of having their independence taken from them. Participants also felt that patients might lose the ability to gauge their own safety realistically or suffer a decline in health as a result of being kept safe through limited movement or activities. THE IMPACT OF CLINICAL EXPERIENCES. Participants were asked to consider how their own clinical and work experiences may shape what they view as risky for an older adult. They reported that many care providers are task oriented and can t/don t take time to recognize that their workplace is the patient/resident s home. It was noted that clinical 5
standards for care/risk/function often don t take into consideration the patient s wants or choices, but rather focus on physical safety. In keeping patients safe, they often create more dependence in patients, which in turn creates a bigger workload, resulting in less time available for each patient. Some care providers describe how an older patient may be written off once they go to residential care, even though they are still capable of learning new things and engaging with others. Also noted that that care providers are often hyper- aware of risk and this can impact what they view as acceptable activities for patients. Participants talked about the need to speak directly to patients and focus on ensuring that decisions should be made by the patient, rather than by the staff. Also mentioned was the importance of not generalizing about patients for example, not all older adults are frail, and having some cognitive issues may not mean that a person can no longer make any decisions. BRAIN WRITING: CAPACITY AND DECISION MAKING Participants were shown four questions around the topic of capacity and decision- making, The questions were each in a different section of the event space. Participants spent 30 minutes moving from question to question, adding their thoughts to the board for each question. CONSIDERING AN OLDER PATIENT WHOSE COGNITIVE ABILITIES ARE IN QUESTION: WHAT ARE SOME TOOLS OR STRATEGIES THAT YOU COULD EMPLOY FOR LEARNING ABOUT THE VALUES, GOALS AND WISHES OF THIS PATIENT? Formal cognitive testing Working with the family Ask the person for their idea o the perfect day Engage them in their home environment Try journaling Don t ask open ended questions to someone with a cognitive issue these questions may be too hard to answer Ask about their past, their hobbies, their family and about what is important Ask how they made decisions in the past Set aside your own goals and values Work in a group Observe their interactions with others 6
CONSIDERING AN OLDER PATIENT WHOSE COGNITIVE ABILITIES ARE IN QUESTION: HOW CAN HEALTH CARE PROFESSIONALS ENSURE THAT THE PATIENTS GOALS, VALUES AND WISHES STAY PRESENT IN CONVERSATIONS WITH THE FAMILY AND HEALTH CARE TEAM? Have the patient involved in conversations with others Read their body language Make sure you took time to get to the know the patient before these conversations with others Put it in the nursing care plan and share it with others Talk to the family about the person s right to make decisions Remember that capacity isn t black or white they may still be able to make some decisions Think about how the family meeting is being organized or held is the patient at the centre of it or is the family the focus? NAME SOME THINGS THAT ARE EXTERNAL TO OUR HEALTH CARE PROCESSES AND PRACTICES THAT COULD IMPACT A PERSON S CAPACITY (E.G. DELIRIUM, EDUCATION LEVEL). Language barriers Coping skills Cultural practices Finances Life altering events Religious beliefs Co- 0morbidities Capacity Isolation Loneliness Spouse/spouse s health or influence Dear from past experiences Abuse Medications Pain Tiredness 7
DESCRIBE SOME WAYS IN WHICH OUR OWN PROCESSES, PRACTICES AND BEHAVIORS CAN IMPACT A PERSON S CAPACITY TO MAKE A GIVEN DECISION. The environment noise, bustle, fast pace Time of day are they tired, just woke up? How we speak to them and deliver information Jargon or complex language Involving the family Use of restraints Our own values, biases affecting the conversation or affecting our view of the person Following policies or procedures 8
AFTERNOON SESSIONS In the afternoon sessions, community members who represented older adults and their families joined the workshop participants. WHAT IS THE ROLE OF THE PATIENT AND FAMILY? These workshops focus on Dignity of Risk for older adults, so if we are interested in care providers incorporating this concept into their practice, the patient and family must have important roles. We asked the participants to consider these roles in the incorporation of the Dignity of Risk. Participants talked of the importance of family in support of the patient, be they inpatients, residents or living in the community. An important part of this support was described as educating themselves and learning to accept decisions made by the patient, even when they might not agree with them. Striving to listen to what the patient wants before imposing their concerns or wishes was also discussed. The roles of the patient were described as being open to sharing their fears, what they see as risks and ways they could imagine mitigating risk. They also discussed the need to have conversation with their family about their priorities and wishes before a crisis arose. HOW CAN CARE PROVIDERS HELP PATIENTS AND FAMILIES TO UNDERSTAND RISK? Health care providers work within their own culture and guidelines and these are often quite foreign or unknown to patients and families. Previous workshops have shown us that health care providers realize they often use jargon such as 24 hour care or gloss over options that they feel are not good choices for patients. We asked the participants to consider how health care providers could help patients and families have a better understanding of what risk is in a variety of settings. The workshop participants responded with a variety of ideas including family conferences where a package of information would be offered to families so it could be reviewed, along with a discussion of what community supports are available. They also described breaking down jargon or larger terms to offer specific examples of what they mean or actual statistics for risks such as falls. They also stressed the importance of describing risk in all settings, including ones that may be under- described such as risks to the patient posed by staying in hospital or 9
residential care. The idea that risk exists in a variety of settings - it s not necessarily the place was also discussed. HOW CAN WE SUPPORT FAMILIES COMFORT LEVEL WITH RISK? While some patients may be unsure about risks they face, it is more often the families who are concerned about risks that the patient may wish to take while living their life. We asked participants how health care providers could help support families and patients in feeling more comfortable with the risks being taken. Participants indicated that it was important to communicate with families and educate them about the realities of risks in all settings. They also suggested asking families how they would like to live their life when older, and discuss this with the patient as well. Supporting the patient s right to make decisions was also a topics in conversations about this questions. The need for health care providers to offer this support directly to the patient was discussed b, but particular attention was given to the need to. STORY TELLING SESSIONS Participants were invited to consider a story about a time when they saw someone s Dignity of Risk challenged, or when they saw it supported. Each storyteller hosted a session and those who were listening to the story were assigned tasks such as recording pivotal moments or themes from the story. When the storyteller finished speaking, each group then discussed Unfortunately, due to the number of facilitators and the number of story telling groups, we were unable to capture each story and the conversations around these. Overall, storytellers discussed themes around some of the following: The conflicting wishes of family members. Understanding that decisions may upset you and still be the best choice for someone else. The importance of family support and involvement. The importance of ensuring comprehension on the part of the patient to ensure true consent. 10
Learning to be an advocate for your patient and their wishes. Pivotal moments that were discussed in the stories typically centered around moments of crisis, especially those which caused a physical injury such as a fall, or a medical issue that caused the person to be brought to the hospital. For the participants, the stories also surfaced questions around a variety of issues such as How well the patient truly understands their medical condition. How well things like medication are supervised and reviewed review for patients. How, and how well, patients are assessed during rehab and what impact this has on what happens next. Whether or not risks were well discussed and who was included in these conversations. 11