Resources Module 8: Engaging with Patients and Carers
Patient Story
Claire came into the ER where Bryan was working as an emergency physician. She had an old neck collar on upside down and was complaining of neck pain and a bad headache. She was about 60 years old, and Bryan thought she might have had a mental handicap because she had difficulty describing her symptoms. Her son and daughter were with her. This ER was always busy, and the administration had been pressuring the doctors to move patients through more quickly. Bryan examined Claire briefly and saw no worrisome signs. X-rays of her neck showed nothing wrong; Bryan assumed she had slept wrong or pulled a muscle. So he discharged her with some pain medication and picked up the next chart in the bottomless stack.
The next morning Bryan received a call from an ambulance transporting a female who had suffered cardiac arrest. She was brought into the resuscitation room, where CPR was continued. Bryan didn’t recognize her at first, but then he noticed a familiar-looking son and daughter sobbing in the hallway. Bryan looked at the lifeless patient and almost broke into tears himself. In the rush the day before, Bryan realized that he hadn’t listened carefully to Claire’s complaint of severe headache. Now it seemed clear to him that he had overlooked a symptom of an impending stroke.
Everything was done to save Claire but in vain. After Bryan pronounced her dead he met her son and daughter in the small chapel near the emergency department. He started to explain—in way too technical terms—what happened. Then he paused, and tears came to his eyes.
“I’m so sorry,” Bryan said. “I wish I had ordered a CT scan yesterday. I must have missed something. I’m so sorry.”
“That’s okay,” Claire’s daughter replied. “We know you did your best. Mom said you were a good doctor.” Bryan couldn’t stop his tears now. A few days later, he went to the funeral, where he sat with Claire’s children. (Kita, 2012)
Engaging with patients and carers
There is generally low level involvement of patients in their own care. Patients are the least represented stakeholders in health-care safety and quality improvement efforts. Because patients and their families are not as organized as other stakeholder groups, their interest and needs have not been captured or integrated into research activities, policy development, patient safety educational curricula, or reporting systems
Every patient has the right to receive information about the care they are receiving. Informed consent allows patients, in collaboration with health-care providers, to make decisions about interventions and potential risks.
Patient engagement activities divide into: learning and healing after an adverse event; and engagement of patients in preventing harm.
Informed consent process enables patients to consider options in relation to their care and treatment, including alternatives to the course of treatment proposed.
The consent process has two main phases: elements that inform the patient and elements that enable the patient’s decision-making process.
Health-care providers are encouraged to use evidence-based health care. For many treatments, there is a body of evidence on the likelihood of success or harm. It is important that such information is communicated to patients in a way that they can understand.
Before an individual patient can decide whether or not to accept a treatment, he or she needs to have information on the diagnosis, the degree of uncertainty in diagnosis, range of treatment options and risks involved in each, information on expected recovery time, information regarding their healthcare provider (name, position, qualifications and experience) and the cost and availability of medication and services required.
Tools have been developed to enhance good communication. One of these is the SEGUE( Set the stage; Elicit information; Give information; Understand patient’s perspective; End the encounter) framework developed by Northwestern University (Chicago, USA)
Cultural competence is the knowledge, skills and attitudes that a health-care professional needs in order to provide adequate and appropriate health-care services to all people in a way that respects and honours their particular culturally-based understandings and approaches to health and illness.
Open disclosure is a term used to describe the process of informing patients and their families of bad outcomes of treatment, as distinguished from bad outcomes expected from the disease being treated.
Key principles of open disclosure include openness and timeliness of communication,
acknowledgement of the incident, expression of regret/apology, recognition of the reasonable expectations of the patient and his/her carer, support for staff and confidentiality.
Health-care providers may want to provide accurate and timely information to patients about an adverse event, yet fear that such communication may result in legal action or, at a minimum, confrontation with an angry patient or family member. Health-care providers may also be ashamed and/or fear causing more distress to patients, as well as the loss of reputation, job and/or insurance coverage.
The communication tool 'Setting, Perception, Information, Knowledge, Empathy, Strategy and Summary' (SPIKES) is used to assist health-care professionals to communicate bad news in situations where the patients are at the end of their life (WHO,2012)
Read more using WHO handout, Engaging with patients and carers
Optional reading for this Topic includes: Guide to Patient and Family Engagement in Hospital Quality and Safety by Agency for Healthcare Research and Quality (AHRQ), US Department of Health and Human Services (AHRQ, 2017)
References
Agency of Healthcare Research and Quality (AHRQ) (2017) Guide to Patient and Family Engagement in Healthcare Quality and Safety [Online][Accessed on 1st October 2023][Available at http://www.ahrq.gov/professionals/systems/hospital/engagingfamilies/guide.html]
Kita J (2012) Doctors confess their fatal mistakes. Readers Digest. Yahoo! life[Online][Accessed on 28th April 2021][Was available at https://www.yahoo.com/lifestyle/doctors-confess-fatal-mistakes-025908763.html]
World Health Organization (WHO) (2021).Engaging with patients and carers [Online][Accessed on 1st October 2023][Available at https://cdn.who.int/media/docs/default-source/patient-safety/curriculum-guide/resources/ps-curr-handouts/course08_handout_engaging-with-patients-and-carers.pdf?sfvrsn=a46680fa_9&download=true]