Over the past few years I have been working as a researcher, educator and advocate to try to get more healthcare professionals to integrate a palliative care approach into their routine practice. When I started this work I naively assumed that other healthcare providers would be as inspired as I was when I first came across these ideas and that it would immediately transform their approach to healthcare. While providing education on palliative care was transformative for some providers, it didn’t make a measurable impact on many.
I suspected that some of these people had a hard time developing new habits, some were actively resistant or fearful of this approach, and some probably just needed more ongoing training and encouragement. Regardless, I wanted to find a way to ensure that the patients and families of these providers still received palliative care. That was when I realized that I had been neglecting training the most central and well-positioned members of the healthcare team, namely, the patient and family themselves.
It is a bit of a paradigm shift to see patients and families not merely as healthcare recipients but as active members of the healthcare team. However, once you make that shift you see that there is no one else who knows more about the patient, spends more time with the patient, or who is more invested in their wellbeing. The key for healthcare providers in making this shift is respecting patients and family as the expert on their personal health and trusting them as partners in care. The key for patients and families in making this shift is learning fundamental healthcare skills and developing the confidence to actively guide their own care.
The palliative care skillset provides a great foundation for patients and families to improve the care they receive. You’d be surprised at how often providers are open to your input and appreciate the effort you put into your visits. You might also find that some providers are resistant to listening to patients. If so, this approach may lead you at times to find new providers who better align with your values.
The following list outlines 5 pillars of palliative care, the key skills associated with them, and how tools to help you apply them to your care:
Set the agenda for your visits
Emotional and Spiritual Support
Go outside of the medical model
Counseling and peer support
Clear communication about current and future health concerns
Start important conversations and let providers know what is important to you
Question prompt list
Ask for what you need
Timely Referrals for Specialist Care
Get an extra layer of support and expert care
Referrals to other providers or resources in your community
We will dive further into each of these pillars, including skills, tools, attitudes and communication tips, in future blogs.
In the meantime, here are a few links to other sites to get you started:
Clear communication: Here is an example from the cancer world of a question prompt list.
Family support: Here is a great starting point for family carers.