Family can be difficult. On one hand, these are usually the people you can depend on the most but on the other hand they are also the ones most likely to push your buttons, push your boundaries and act a total fool when they don’t get their way. Whether or not you are close to your family, the death of loved one forces us together and when not prepared it can rip a family apart.
As a 25 year veteran nurse of ICU and Emergency Departments, our founder sadly observed a reaction to end of life circumstances which were common in many families and that reaction was anger and ill will toward each other.
A person’s end of life is often fraught with difficult decisions for family members. Should their loved one be kept on life support? Should we pursue experimental and invasive services to prolong life? If their heart stops should we do CPR and put them on a breathing machine? What would they want if they could tell us? In many cases, patients are unable to share their desires and if they can, they often won’t due to fear of causing conflict. It is not uncommon for end of life patients to be put through painful and ultimately fruitless procedures because one or two family members bully the rest into agreement. Unfortunately, more often than not the patient’s quality of life is not really improved by these procedures even though they may add a few extra days to their life. Because some family members were unable to face the fact that their loved one was going to die, the last days of the individual’s life were painful and bitter rather than peaceful and loving. This is one of the many reasons why patients should prepare for their end of life before the time comes for them to face it.
Advance Directives and Living Wills are the legal ways a patient can express their personal desires for how they leave this life. For patients who know they want to fight until the end and receive every treatment available, it is important to let their family know this. On the other hand, when a patient prefers to die naturally when the odds are stacked against them, that too is important for family and the hospital staff to know.
This subject is one that I have personal experience with. In 2015, I lost my mother to leukemia. She fought hard and the precarious nature of leukemia made it difficult to know when she was nearing death. She had decided early on that she didn’t want to be in excruciating pain and that when the time came it was more important for her to be with family than in a hospital. She adamantly knew she wanted to die at home surrounded by her friends and family.
Maybe because I’m from the south, my family are prone to more intense emotional outbursts. None of us were handling her end of life well. We all wanted her to keep fighting. Mom’s sisters and extended family were just as involved in her life as her kids and spouse. One family member in particular was determined to keep her alive no matter the costs and this family member had recruited allies to her cause. When mom got to the point where death was imminent, this family member tried to bully the rest of us into keeping her in the hospital and trying every last treatment. Luckily, mom had an Advance Directive and by sharing that document, we were able to stop that distressed, highly emotional family member from forcing Mom into a situation she clearly didn’t want.
Before my mother passed, she told me how thankful she was that her wishes were granted. Verbal discussions about end of life decisions are needed and very important, but in stressful situations memories of those discussions can be warped and altered by our own fears and uncertainty. My mother died at home while her family sang her favorite hymns, her husband playing the guitar, her nieces and nephews playing around her, and comfortable in her own surroundings. Her whole family was there to celebrate her life and mourn her passing exactly as she wanted. By putting her wishes in writing, my Mom ensured that her wishes were met and that her family wasn’t torn apart at a time when we needed each other the most.
Living Wills and Advance Directives don’t keep our loved ones with us longer. They won’t help remove the pain after your loved one is gone. But what they will do is help ensure family and treatment providers do everything in their power to follow the wishes of the person who is transitioning and to do so with as little conflict as possible. If you are like me, that extra information does help navigate the grieving process by knowing the choices we made were the ones your loved one preferred. Isn’t that worth the effort of completing an Advance Directive?
For information on how you our your loved one’s primary care provider can work with you to complete an advance directive please visit our blog posting, Compassionate Healthcare, A Guide To Advance Care Planning In The Primary Care Setting.