COMMUNICATING WITH PATIENTS AND FAMILIES
Communication can be the most effective medical therapy.
General talk tips:
- Seek permission for difficult conversations, and ensure patient’s desired people are at meeting
- Talk less and listen more to meet needs of patient/family as opposed to your tasks
- Be aware of non-verbal communication
- Get interpreter if first language of patient/family at meeting is not same as healthcare professionals
- Use plain language
- Check for patient/family understanding when giving medical information
- Encourage questions, allow silence
- Document important conversations
Patient Dignity Question
This one question can provide very useful information that will aid in the care of the whole person:
“What do I need to know about you as a person to give you the best care possible?”
Breaking Bad News
SPIKES
S = Setting up interview
- preparation, privacy, involve significant other
P = assess patient’s Perception
- “Tell me what you understand about what is happening?”
I = Invitation to information
- “Some people like all the information, others just want the big picture. How much information is right for you?”
K = sharing Knowledge and information
- words of warning: “I have some bad news for you…”
- share information in plain and clear language
- check for patient understanding: “Is this making sense to you?”
E = addressing Emotions with Empathetic responses
- empathize and validate “This must be difficult for you…”
- when not sure what to say – silence is OK
S = Strategy and Summary
- identify coping strategies, sources of support
- ask if patient/family have any questions
- plan for the future “I will come back to see how you are tomorrow”
Responding to emotion and suffering: NURSE
Naming: it seems like you are experiencing …
Understanding: Thanks for sharing. It helps me to understand what you are thinking/feeling
Respecting: I can see you are following our recommendations/taking all the medications etc…
Support: I will do everything I can to ensure you get what you need/remain comfortable etc…
Exploring: Tell me more about what you mean when you say…
Advance care planning conversations
Patient/family need professionals to initiate
Ongoing conversation
Introduce early in illness and revisit after change in disease status, hospitalization or if patient asks.
Future plans
“Have you discussed your thoughts about the future with your family or ever put them down in writing?”
Decision-making
“How do you make decisions? Do you make them on your own or make them as a family?”
“If you were unable to speak for yourself who will make decisions for you?”
Fears
“Do you have any fears or worries about the future?”
“Is there anything that would be worse than death for you?”
Aware of all options
“There may come a time when we suggest treatments you don’t feel comfortable with or a time when you wish to stop treatment. We will understand and support you in this decision and will continue to work with you to have you live as well as possible.”
Prognosis
Determining and communicating what patient can reasonably expect of future regarding medical condition and treatment.
Aids patients in making treatment decisions, avoiding futile/unwanted therapy
Helps them to plan their life, have greater sense of control
Evidence that it can preserve, and promote, hope among patients/families
Use published studies, or prognostic indices depending on most responsible morbidity
In multiple morbidities/frailty/declining function best to communicate that patient is “sick enough to die, but we are not sure when that will happen.”
Communicating uncertainty is better than no communication about future
Useful tools: ePrognosis https://eprognosis.ucsf.edu/
“Some people like to know all the details, others just want the big picture, and some prefer not to discuss it at all. What is best for you?”
If information desired, start with
“Tell me what you understand about your illness.”
If prognosis uncertain
“We are not very good at predicting how long people live with your disease, but I would estimate years/months/weeks/days.”
Other useful phrases
“We cannot cure your disease, but our goal is to help you live as well as you can for as long as you can.”
“Although we don’t have any further treatments to reverse the disease, there’s always something we can do to help you feel better.”
CPR in advanced illness
- focus on what will be done and not what is no longer offered
- not obliged to offer futile treatment but should always explain why it is not being offered
“We will do everything we can to help you live as well as you can for as long as you can, and when you die, we will help you to have a peaceful and natural death.”
if there is unwillingness to accept this explore concerns and myths:
- DNR does NOT mean no more treatment
- CPR will not improve the outcome of the illness
CPR video decision-aid for patients: https://vimeo.com/48147363
End-of-life discussion
Discussion about withdrawal/withholding of treatment; transitioning to end-of-life care
Follow modified SPIKES – see Breaking Bad News
S= Include significant others
P=“Tell me what you understand about how your illness is affecting you now?”
I=“Are you the kind of person who wants to know all the details, just the outline, or not talk about this at all?” “Do you make decisions on your own or as a family?”
K=“When you began the treatment the hope was that the disease would remain controlled (or cured). Unfortunately the disease is continuing to progress and we need to consider what is next.”
Give information about disease state, reason for withdrawal/withholding and focus on what can still be done.
“Although we do not have any further treatments to reverse or stop this disease, there is always something we can do to help you feel better.”
Share information, and check for understanding or questions.
If there is indecision by patient/family: “Would it be helpful to you if the team made a recommendation?”
Decision-making can be a process and may need further meetings
E=validate feelings with empathy
S=summarize discussion and decisions if made. Document and share with team so everyone “on the same page”. Or plan to meet to further discuss or decide.
Goals of care
- assist in developing care plan that best fits patient’s beliefs and values
- useful at time of admission to facility (acute or long term care)
- part of ongoing process and may change over time as patient condition changes.
- can be part of end-of-life or advance care planning conversations or on its own
Explain purpose of conversation: discuss what lies ahead, ensure we provide you with the care that you feel is right for you
Assess understanding and preferences for information: “What do you understand about your illness?”
Sharing clinical understanding of illness: see Prognosis and Responding to Emotion
Explore goals, hopes and fears, sources of strength, preferences for care: see Serious Illness Conversation Guide
Summarize and close the conversation: “So what I am hearing is that you feel … and keeping this in mind and what we know about your illness, I recommend…. this will help us ensure that our treatment plan reflects what is important to you.” Affirm support.
Document the conversation and the decisions
Serious Illness Conversation Guide https://bc-cpc.ca/wp-content/uploads/2018/08/SIC-Conversation-Guide-V3-April2017.pdf?pdf=SICConversationGuide%E2%80%8B
Cultural Competency
the process of actively developing and practicing appropriate, relevant, and sensitive strategies and skill in interacting with culturally different people
minority cultures access palliative care less or later
elements of palliative care affected by culture: meanings of life and death (e.g. death not end but a transition), spiritual and religious care, language and communication
Ask about culture rather than stereotype or presume values and beliefs.
“What do I need to know about your culture to help me take the best care of you?”
Helpful Resources
Living My Culture: multiple topics in multiple cultures (includes Indigenous)
https://livingmyculture.ca/topic/traditions-rituals-and-spirituality/
First Nations Health Authority Cultural Safety and Humility
https://www.fnha.ca/what-we-do/cultural-safety-and-humility
Beginning the journey into the spirit world: First Nations, Inuit and Métis approaches to palliative and end-of-life care in Canada
https://www.partnershipagainstcancer.ca/topics/indigenous-palliative-care-approaches/summary/
Walking Alongside Indigenous Peoples who are Seriously Ill: Education for Community Caregivers https://cerah.lakeheadu.ca/resources/indigenous-health/cerah-resources/walking-alongside-indigenous-peoples/
“Kleinman’s questions” can be useful if patient/family have ongoing distress over direction of care, non-compliance with treatment, requesting futile treatment, have distrust of healthcare team
- “What do you think has caused your problem?”
- “Why do you think it started when it did?”
- “What do you think your sickness does to you?”
- “How severe is your sickness? Will it have a short or long course?”
- “What kind of treatment do you think you should receive?”
- “What are the most important results you hope to receive from this treatment?”
- “What are the chief problems your sickness has caused for you?”
- “What do you fear most about your sickness?”
Trauma acute and chronic
because of adverse childhood experiences: poverty, neglect, exposure to traumatic events, abuse – physical, psychological, sexual
Symptoms and signs of chronic and complex trauma:
- alterations in regulation of affect and impulses: chronic dysphoria, suicidal preoccupation, explosive anger, self-injury and substance use disorders
- alterations in attention or consciousness: amnesia, intrusive reliving of events, dissociation
- alterations in self-perception: sense of helplessness, shame, guilt, aloneness
- alterations in relations with others: isolation and withdrawal, disruption in intimate relationships, persistent distrust, and repeated failures of self-protection.
- somatization: tendency to experience and communicate psychological distress as bodily and organic symptoms and to seek medical help for them.
- alterations in systems of meaning: despair, loss of faith, hopelessness
How to ask about trauma
- Not “what is wrong with you?” but “What has happened to you?”
- “Are there things that are triggering for you?”
Serious Illness Conversation Guide with Structurally Vulnerable Patients
complete guide with useful talk tips
Specific situations
Talk tips for difficult situations
“Don’t tell them they are dying”
explore basis of request
ethical obligation is to ask the patient what information they want about their illness – and to respect this
if English is not language of the patient – get professional interpreter and ask patient, in presence of family, about preference for information and decision-making
“Everything must be done”
aggressive disease therapy not indicated, yet patient/family repeatedly request full medical therapy
explore what patient/family understand about the illness – consider cultural questions, ensure family fully informed
explore what “everything must be done” means to patient and family
find “common ground” between patient/family and healthcare team and work from this point
build trust with patient/family and ensure consistent messaging
ethics consultation very helpful
Anger
patient/family anger with life and health situation can be projected on to healthcare team
do not take personally, but do not ignore
Identify the emotion
“You seem angry today.”
If you understand cause of anger you can validate it. “It must be difficult for you to hear this hard news”
If you do not understand the source of the anger ask: “Can you help me understand why you are feeling this way?”