I’ve come a long way when it comes to family meetings. I remember how nervous I was walking into my very first family meeting where two members broke out into a physical fight over their differing views regarding palliative extubation. It took me many trials and tribulations to establish a structure for my meetings. Through that time I found a structure that works for me. I found that this was very similar to the SPIKES, a six-step protocol for difficult discussions.
Step 1: Setting up. It starts with a pre-meeting huddle between the primary team and the palliative care team. The purpose is to understand the meeting goals. Are we trying to establish code status, goals of care, or just education? Next, find a quiet location where everyone is seated and able to see/hear. Allow everyone to introduce themselves and explain their role especially palliative care. Explain that you have a service that offers support to patients and their families who are going through a difficult time. Reiterate that this is Palliative care not Hospice care.
Step 2: Perception. This is a great time to get an idea of the patient or their family’s understanding of the current situation. This allows the medical team to correct misinformation. You should meet the patient and their family at their understanding and tailor the conversation.
Step 3: Invitation. It took me a long time to start implementing this step. The idea is to ask the patient and their family for permission to discuss the matter at hand frankly. This allows the them to have some control in a time when there is none. A majority of the time, patients agree to hearing everything you have to say.
Step 4: Knowledge. This is the time for us to explain the disease process and trajectory. Make sure you use little to none medical jargon. Explain small amounts of data and check in frequently to assess for understanding. As part of a medical team, we spend hours pouring over history, labs, and imaging in attempts to diagnose and treat patients. More often than not the family has no idea what has been going on. So this is your chance to describe all the hard work that you and your team have been doing detailing the results of the testing and the ongoing treatment.
Next explain what the near future would look like for them. For example, aggressive stage 4 cancer patient who failed chemotherapy would have worsening nutrition and failure to thrive as well as increasing infections or an End stage dementia leads to aspiration pneumonia, urinary tract infections, pressure ulcers, septicemia, failure to thrive, and delirium. Essentially, you are describing what the quality of life would look like as their disease progresses.
Step 5: Emotion. You are giving families terrible news, and naturally, they are going to be upset. Validate their feelings, acknowledge their emotions so that they can process the information and reiterate that you are a support system for them while their loved one is in the hospital.
Step 6: Strategy and Summarize. Finally, it’s time to present the treatment options and establish realistic therapeutic goals. One way is to ask the family what the patient would have wanted in terms of their wishes and quality of life at the end of their life. Asking the family what the patient would have wanted is a great way to make shift life or death decisions to the patient’s desires. As physicians, the right decision seems so easy; however with varying levels of medical literacy, it’s actually a emotion and difficult process.
Often times during this part, patients and families ask for the approximate time a loved one has. I find that giving time frames such as hours to days, days to weeks, weeks to months, or months to a year as a way to answer this question. If you’re wondering how to come up with time ranges, consider what the indications for hospice as related to a certain disease process. These guidelines are created based on evidence based research using end-stage patients in each disease state and determining the average time to death around six months. I linked the hospice guidelines to this post.
This is a challenging time in the patient and their families lives. Effective communication with families ensures that informed medical decisions are made in the best interest of the patient. The most important person here is THE PATIENT, so practice and perfect your technique. Here’s a great video to summarize: http://vitaltalk.org/topics/conduct-a-family-conference/ and there’s a citation below for the SPIKES protocol.
I would love to hear what works for you guys!
Dr. Keerthi Shah, DO
Baile WF, Buckman R, Lenzi R, Glober G, Beale EA, Kudelka AP. SPIKES—a six-step protocol for delivering bad news: application to the patient with cancer. Oncologist. 2000;5(4):302–311.