By Brian McKaig, the Caregiver Homes State Director for Rhode Island.
I've had the conversation more times than I can count, and many more times than I have cared to. It's the conversation that is more taboo than religion, more divisive than politics: it's the discussion with an individual and their family when you have to introduce end of life issues.
I remember the first time that I had to speak with a family and patient. It was in a hospital room up on the eighth floor. Bells were ringing, buzzers were going off, staff scurrying around and floors being mopped. Tripping over the yellow, "CAUTION, WET FLOOR" sign didn't ease my angst any as I peered into each room as I passed by... 826, 828, 830 and finally Room 832, my destination. I had been asked there by a family member as an ordained minister to tell the family and the patient that the prognosis was poor, and their chance for survival more than 3 months was highly doubtful.
Maybe you aren't charged with the same responsibility to tell someone that they are dying, but everyone will face this as a health care practitioner, a family member or a friend at some point in their lives. Because of our role supporting and helping families and caregivers, questions around end of life issues frequently come up. Often, individuals we work with are experiencing this situation for the very first time. How do you face an individual who is actively dying, and more importantly, what can YOU do to help? This truly is a crucial conversation and so here are some places to start...
- Make sure it's a quiet place free from distraction. Turn phones off, alert the staff or potential visitors to the need for privacy.
- Close the door/ pull the curtain, find a separate room.
- Don't push the conversation. Assess the comfort level of the individual, as it may be necessary to ask some family members for a few minutes alone.
- Pull up a Chair – sit at eye level to the individual you are speaking with.
- Assess what the individual/family already know & understand.
- Ask their views about the current situation.
- Discuss with the individual their overall hopes and goals for the remainder of time they will be living.
- Review treatment options and preferences.
- Be prepared for emotions.
- Do not overwhelm the individual/family with too much information in one sitting.
- Share small pieces at a time, be sure the individual wants details before you provide them.
- Pause to allow for questions or clarification, such as: Is this making sense to you? Do you understand what has been explained so far?
- Discuss decisions that may need to be made now or in the near future.
- Summarize the main points.
- Incorporate the individual and family's concerns and viewpoints.
- Review additional information that is needed.
- Identify coping strategies and sources of support.
- Make a plan to follow-up or meet again as appropriate.
Always be prepared for the question that will be asked as you place your hand on the door to leave. Sometimes, it is this question that is the most important of all. In fact, that conversation back in room 832 didn't really begin until I was ready to leave. I had fuddled through explanations, probable outcomes, and technical information. I was stonewalled at each turn, ensnared in family disagreement and discussion. I was overwhelmed, and felt like I was drowning. As I gathered my papers, I dropped my head and headed for the door. I couldn't wait to escape. My hand grasped the door, and I heard a desperate, "What would you do if you were me?" I turned back, hoping I had heard wrong, or that the question had been directed at someone else. "Me?" I muttered, pointing weakly to myself. "Yes", came the reply, "What would YOU do if you were laying here dying."
And that's when the conversation really began. You see, it was at that moment that I realized that someday, it would be me facing this inevitable event. It became personal that day in Room. 832. I learned above all else to be human, to look someone in the eye, to shed a tear, to feel what they are feeling. After all, isn't that the most powerful way to show you care?