Communication and Planning

How do we equip our patients and their caregivers to talk about difficult topics with their families? I know that in our family, all of us feel the need to know what's happening with our parents, and to be involved in the decisions that are made, as these decisions affect all of us.


When my husband and I were talking about getting hospice involved for a family member a few weeks ago, before we called hospice, we made sure that all of the siblings knew what we were considering, and that they had a chance to be involved and ask questions before anything was decided. He was also very concerned about how to have this difficult conversation so that it would not come as a shock to them. I shared with him how providers often determine hospice eligiblity, by asking themselves the question "Would I be surprised if this person died within the next 6 months?" Considering how sick she was during her admission and her deterioration over the last year, his siblings came to the same answer as we and her provider did- no we would not be surprised. and they agreed with the idea of getting hospice involved. 

I think that involving families in the discussions with the patients and giving them tools to have these conversations with their loved ones is a critical piece of the communication piece that we may be missing, but that we should consider including. Can you imagine getting a call from your sibling who is the primary caregiver for your parent, and they drop this type of bombshell "Oh, by the way, Mom enrolled in hospice today", or  "Dad had his defibrillator turned off yesterday."  What would that feel like? How would that impact your relationships with your family members- perhaps long-term, and especially at a critical junction in the family history, when family members need to work together in supporting and providing care for their loved one. 

So, the take home message? 

• Talk to patients early in the HF diagnosis about what to expect over the course of the diagnosis. 
• Include information about the unpredictability of the HF trajectory, functional decline with advancing disease and the likelihood of sudden death. 
• Encourage and assist with advanced care planning and document their specific wishes so that the entire team will easily find this info during an emergency.
• Encourage them to talk with their families about what might happen, and to prepare financially, legally, etc, just in case something unexpected happens to them- often people are worried about not being a burden to their families, or what will happen to them when they are gone. Speak to these concerns as reasons for planning ahead. 
• Revisit these discussions at important turning points such as following a hospitalization, and when you see important prognostic indicators such as the development of frailty and recurrent decompensation episodes. Consider talking about it annually at routine visits for stable patients. so it becomes a normal thing that you talk about in your patient- provider relationships. 
• Individualize advance directives in accordance with patient preferences. Be as specific as necessary, including options about device deactivation, CPR, drugs, intubation, dialysis, etc., and whether they want these options when the cause of the problem is easily treated.  
• And finally, share with them the decision-making processes and tools that you use applied to their case, to help them understand, AND to give them the tools to have these discussions with their loved ones.