Conducting a palliative care discussion to explore whether the type of medical care a patient is receiving makes sense with what is important to him/her is a challenging task. These types of discussions are often difficult for everyone involved – patients, families and clinicians. The fact such discussions are difficult is one of the major reasons why they either don’t occur or only occur extremely late in the trajectory of illness. The ability of a clinician to set a context where such discussions are safe and to invite patients’ and families’ into such a discussion is critical for success. An invitation is not a mandate and while the vast majority of patients’ and families’ will gratefully accept such an invitation we must always be aware that some will not.
Setting a safe context for the palliative care discussion requires an awareness of the patient and family’s values and cultural perspective, which often requires subtle understandings. If the clinician already knows the patient and family values, it makes it much easier to set the context and facilitate the discussion. In the clinical setting the easiest situation is when the patient and family agree they no longer wish to pursue life-prolonging therapies and ask the doctor to discuss a palliative approach. Unfortunately this type of situation is the exception rather than the rule. Usually the palliative option has either never been explored or there is an unspoken agreement not to mention it.
While there is no prescription that will fit every situation, the following protocol has been shown by qualitative researchers to be a best practice approach used by numerous palliative care and hospice clinicians.
Setting the context of a Palliative Care discussion:
- Explained Palliative Care
- Clinician expert in caring for patients and families dealing with complicated illness where there are no easy medical solutions
- Defined “Good Medical Care”
- When a pt/family are facing a serious illness for which there are no medical treatments for cure, most patients and families wonder: What is good medical care for me?
- Any medical treatment that helps the pt live a life that has meaning and makes sense to them is “GOOD” medical care.
- Any medical treatment that causes the patient to live a life that doesn’t make sense to them or increases their suffering should be discussed and likely discontinued.
- Their family who is accompanying them must also live a life that makes sense to them as they share the journey.
- Explained Limits of Medical Model:
- This presents a problem for nurses and doctors because the way we know if treatments are effective is by objective tests and measures of function
- If test results or measure of physical function are better, treatment is working
- If test results or physical function is worse treatment is not working
- There are no objective tests or measures that tell the medical team if the treatments we are providing support you in living a life that makes sense to you and your family
- The only way to know what makes sense to you and your family is to have a conversation
- Explained value of pt/family expertise
- You are the experts on how you and your family want to live your life.
- Explained value of integrating pt/family and medical expertise
- As a Palliative Care Physician I am an expert at caring for very sick patients. I know many treatments that might be of benefit to you.
- But until I know what you and your families goals and values are I don’t know if my suggested treatments will help you live the life you wish or cause more suffering and distress
- Invited pt/family to share story
- I would like to ask you some questions that Doctors don’t typically ask.
- Got permission to explore pt/family story
- Is that OK?
The suggested script for setting the context needs to be adjusted for the unique patient and family you are caring for. Every step may not be needed or additional steps may be added. Expert palliative care clinicians use this framework or something similar when conducting palliative care discussions.