Although it is vital to have conversation with loved ones about advanced directives, starting the dialogue can be difficult. We worry we’ll scare people off, thus making the process even more challenging. There are many ways to introduce this conversation. Three themes with example conversation starters are highlighted below. We have consulted with Erin Hickey, a palliative care physician at St. Louis Children’s Hospital to bring you exclusive tips on tackling this topic with people you love most.
How can I start the conversation without scaring my loved one?
There are three main ways to introduce the topic that will help you ease into the dialogue.
#1: Normalize the topic of advance care planning and approach the conversation with curiosity.
“It’s natural to think about the future, and what your preferences for care might be. You probably know people who have advanced directives (your parents, your grandparents, etc.) – have you ever thought about it?”
“Many times, conversations about preferences for medical care come up naturally within families. Have you talked about this with any of your loved ones?”
“I’ve been thinking about what I might want if I were unable to speak for myself or make my own decisions, and I’ll admit – it’s heavy! Can we talk about it together?”
“What do you know about advance directives? This is a question I ask all of my patients – I’m not worried about anything right now, but I am curious as to whether you’ve been thinking about the future.”
#2: Use evidence-based outcomes to demystify the conversation.
“Advance directives can be helpful in ensuring your loved ones are prepared to care for you in the future, and often provide some peace or meaning for the person filling them out, as well. Does this type of preparation feel important to you?”
“A good time to talk about our wishes for the future is when we’re healthy enough to do so. I’d like to start this conversation early. Is now a good time to talk a bit about what advance directives are?”
“Some people worry that talking about their life goals or preferences for medical care with their family could be burdensome. Lots of research into this found that thankfully, the opposite is true – families are less distressed when they know what their loved ones would want. Can I tell you a little more about the benefits of having these conversations?”
#3: Lean into the conversation as it relates to that person’s lived experience or current concerns.
“I’m curious as to whether your experience with [your loved one] has changed the way you think about your own preferences for your healthcare.”
“It seems like you’re worried about what may happen down the road. Tell me more about these worries. I want to help.”
“I hear that you’re hoping for [your cancer to be cured]. I hope for that, too. Have you ever let yourself think about what you might want if we don’t get what we’re hoping for?”
“I heard you are starting to transition from pediatric to adult care providers. They might ask you questions about your future – I can give you some ideas of what they might ask so you feel prepared to talk about it.”
What are peoples’ biggest fears when this topic comes up?
- That the care team knows something about their health that the patient doesn’t know (e.g., the doctor is worried about something bad happening to the patient).
- More often, care teams are hoping to be proactive by starting conversations when someone is relatively healthy. Everyone, regardless of whether they carry a chronic or life-shortening diagnosis, should consider their wishes and preferences for care.
- That the care team is “giving up hope” on a cure, fix, or treatment.
- People can both seek curative treatments and prepare for the future should those curative treatments not work as well as hoped. Care teams want the best outcomes for their patients, which includes ensuring their wishes for their care are respected.
- Navigating the emotional response to thinking about their own mortality.
- These conversations can feel scary or heavy. Acknowledging this with people that you trust can facilitate the conversation.
- Navigating medical uncertainty or ‘grey areas’. Sometimes, people don’t know what they might want, or their preferences may be situational (e.g., they might choose more ‘aggressive’ medical interventions if the process was thought to be reversible, compared to an irreversible progression of disease). This can be distressing, especially in the case of rare or complex illnesses.
- Health-related goals and preferences for care can evolve over time as more is known about a disease trajectory. Decisions you make about your care at one point in time can be modified to reflect the most important values or goals you have at another point.
- That the care team needs immediate answers.
- Outside of potentially life-threatening situations, these are conversations that can happen over time. Personal reflection, support from loved ones, and patient-centered guidance from trusted providers are all valuable aspects of the advance care planning process.
What are things you wish people knew as a physician who experiences this on a daily basis in practice? Any stories, experience, or talking points you would like to share etc.
As a pediatric palliative care physician, I provide care for children and adolescents with serious illnesses. This care extends naturally to their families and loved ones. Very similar dynamics exist between adult palliative care teams and the patients they care for. Through the longitudinal support we provide patients and families, we learn about their hopes and fears, how they’re approaching certain decisions about care, and what is necessary to help them live – to really embrace life – despite having a potentially shortened one. I have been humbled to learn that most families can both hope for the best while being completely aware of the prognosis and expectations of the disease process. Prognostic details are integral to a family’s decision-making process and despite what we as physicians may fear, are highly unlikely to “take away” their hope. Rather, honest and empathic communication about disease can help families navigate what to hope for.
Tension points: what issues, language, topics, actions, lack of actions etc cause the most tension when speaking of end of life care?
There are many reasons why care teams, patients, and caregivers may feel uncomfortable with conversations related to advance care planning and end of life care. Palliative care teams have specific expertise in these areas and can be distinctly helpful in navigating conversations. When palliative care teams are involved early in the illness journey, they have time to develop deep relationships that are rooted in maintaining the quality of life and dignity of the patient. It’s important for care teams and patients to understand the difference between palliative care and hospice: yes, all hospice is inherently palliative care, but not all palliative care is hospice. Palliative care teams understand that support is necessary to offer at all stages of illness and can look different to each family. Some patients need support with pain or symptom management, others with decision-making, and some others with continuity and communication. The breadth of what palliative care helps with is humbly wide and yet intimately personal, and these services should be sought out by anyone (patients, families, and care teams alike) who has or who cares for a loved one with serious illness.