We're not all on the same page...

Here’s the scenario: mom is clearly at the end of her life. She has been brought into the emergency room for care. She has no advance directives and is unable to speak for herself. There exist two choices for mom’s care – the Intensive Care Unit for aggressive management, possibly with ventilator support, or palliative care with the focus on comfort care.

There are numerous children, family and friends involved with mom and they are getting input from every source. Someone knows someone who has the same disease process as mom and they had a round of chemo and are cured of stage IV metastatic disease. Someone knows someone who is a doctor or nurse and they have a host of recommendations to follow not having seen the patient.

The family is confused and at odds over what to do.  No one agrees on what mom would want or what they want for mom. Dad is looking at his bride of over 50 years and does not want to entertain the idea of losing her but feels she’s had a good life and wouldn’t want aggressive treatment. The son thinks that in not doing anything aggressive is akin to murdering mom. The daughter does not want her to be in pain. Another daughter is hoping for a cure. No one speaks to the daughter who lives out of state but is the most vocal in what she wants done for mom. And then there are doctors who will offer a chance at some curative therapy in the hope and belief that mom may be of that very small percentage of people who at this stage in the disease will have some degree of remission. There are also doctor’s who will not tell the family that their mother is at the end of her life maybe because they can’t let go of trying to be curative or maybe they are just afraid of having the discussion about death and dying with the family. The family is overwhelmed, confused, angry, sad, grieving. They are fighting with nursing staff and each other.

Here’s where we come in, our first step is to recognize we can’t cure the patient’s disease or the dysfunction of the family. We set up a family meeting to help provide the family with all the information they need to make a decision regarding the goals of care for mom and to help them focus on quality of life. Most times we are able to help the family get on the same page. And sometimes we are not able to do so. We have yet to come across the perfect family. Every family we come across has some degree of dysfunction.

Sometimes the family has members who are in such denial or have such a strong fear of losing their loved one they will continue futile care and continue artificial means to keep their loved one alive – even at the cost of quality of life. Often, the unreasonable family members, the angry family members remain as they have always been prior to mom’s illness – unreasonable and angry and they frequently stand in the way of family decisions regarding care.

The lesson here is to make sure that you clearly speak to your family about what you want should you be unable to speak for yourself. Appoint a health care proxy who you know will follow your wishes and will focus the care you receive on the quality and comfort level you would want should you not be able to speak for yourself. 

Donna Willenbrock, BS, MS, ANP