"I'll just go with the flow."
The 70 year old gentleman said, "I haven't spoken with my older brother in years. He stopped calling three years ago. I keep in touch with my younger brother. Our parents are dead. I have a couple cousins I speak to every couple years."
I asked who he would trust to speak with physicians and make medical decisions for him if he were loopy from a severe infection or unconscious from a car accident?
"My younger brother is on all my contact lists."
I recommended we complete a medical power of attorney (MPOA) form to protect both himself and his brother [read Post 4: Eleven Common Myths About the Medical Power of Attorney (MPOA)]. "If a paramedic or healthcare provider ever questioned your brother's ability to speak for you during a medical emergency, your brother can show him his copy of your MPOA form and say, 'I'm his MPOA. He wants you to speak with me.'"
"It's not necessary. My brother will step up. And if he doesn't want to, then the state can decide. No one else needs to get involved."
"The state will try its very best to get family or friends - anyone who knows you - to make decisions about how your body should be treated until your mind clears up and you're able to decide for yourself."
"Well, then, I'll just go with the flow."
What happens if a person does not have an MPOA at the time of a medical emergency?
Ms. K is a 59 year old woman who was in a terrible car accident. She suffered a large bleed in her brain. This is a problem because there is not much extra space in the brain. If a large bleed occurs, the big volume of blood can push the brain towards the opposite side and squeeze parts of the brain. Brain cells can become damaged long term.
"Prognosis guarded," the healthcare teams write in her chart (read Post 9: How Terminal is Terminal?).
The intensive care unit (ICU) team wants to talk to her family about the likelihood (or unlikelihood) of her eventually leaving the hospital alive and stable. They want to talk about the likelihood of her being dependent on others for eating, bathing, and cleaning up after urinating and having bowel movements in incontinence pads (adult diapers) if she were to eventually be discharged from the hospital. She might eventually recognize her family and possibly interact meaningfully with facial expressions, sounds, or gestures.
Ms. K never completed an MPOA form.
Her daughter in law visits daily and sits for hours by her side to receive updates from the specialists. She shares this information with her husband, Ms. K's middle son, who works during the day.
Ms. K's youngest daughter visits for an hour each evening after work, briefly speaking to cross covering physicians each night, before returning home to put her son to bed.
Ms. K's middle son and youngest daughter do not agree on how the healthcare teams should proceed. Her son agrees with any medical treatment or procedure aimed towards their mom living as long as possible regardless of the condition their mom would likely be in long term. "You never know."
Her daughter wants to pursue treatments and procedures in an attempt to have their mom live as long as possible ONLY if their mom could have quality of life. "She always told me, 'It's no life to be stuck in bed.'"
Ms. K's oldest son lives on the opposite coast. He knows his mom is in the ICU and has not called for updates in two days.
The ICU team has learned that Ms. K has a husband in the city, with whom she separated five years prior and never filed formal papers. No one has heard from the husband yet. "They talk a couple times a year. I left a message on his voicemail, but I'm don't know if he got it."
Who would act as the surrogate ("substitute") medical decision maker for Ms. K?
Most states in the United States have a hierarchy of surrogate decision makers, and the order of surrogate decision makers differs among states. Most states list spouse, children, and parents within the top four.
If a person living in one of these states does not have a designated MPOA (that is, they never completed an MPOA form), healthcare providers would attempt to contact family members and friends in the order listed by their state's hierarchy.
An example might be spouse, then all adult children (majority rules!) unless one spokesperson is agreed upon among the children, then parent or stepparent, then all adult siblings (majority rules!) unless one spokesperson is agreed upon among the siblings, then other adult relative.
If Ms. K lived in a state that followed the above example hierarchy of surrogate decision makers, the ICU team may first attempt to discuss Ms. K's current situation with her husband. If her husband declined getting involved, the physicians would then defer to Ms. K's children.
In Ms. K's case, one adult child is difficult to reach and the other two are not in agreement. The healthcare teams would have to care for Ms. K with this difficult family dynamic to guide them.
If the family could not agree on what Ms. K would want in this situation, the healthcare teams would most likely make default decisions that favored prolonging life regardless of the long term quality of life. After all, they are not receiving a consensus from the family on what Ms. K would consider acceptable quality of life.
One person may say, "Acceptable quality of life for me is being able to return home. Even if I have to walk with a walker, I need to be able to get up and use the bathroom on my own." Another person may say, "Acceptable quality of life for me is living in a safe place where I'll be taken care of. Even if I don't know what is going on, as long as my family visits me every day, that's enough." (Read Post 7: I Want the Best Care Possible for ME - Part 1 of 2.)
Since Ms. K is not able to speak for herself; she had not completed an MPOA to designate a person to act as her voice; and her loved ones disagree on what she would say, healthcare teams would most likely default to "prolong life for now" mode.
Frequently, "for now" ends up being a long time.
There are a couple states in the United States that have no hierarchy in place for surrogate decision makers. "All interested parties" - girlfriend, ex-wife, same gender partner, son, daughter, tennis partner, co-worker, barkeeper, homeless shelter volunteer, anyone who knows and is interested enough to be involved with the person's medical care - legally have equal say in who will make medical decisions for the person who never completed an MPOA form. Whomever the majority of the "interested parties" agrees should be the decision maker becomes the legally chosen and documented medical decision maker.
Healthcare providers would attempt to contact "all interested parties" and document the name of the person that the majority of the interested parties agree should act as the person's voice.
Mr. V's two adult sons by his ex-wife and his common law wife with her adult daughter meet with the medical team to receive the latest updates. Mr. V is too delirious from pain, pain medications, serious infection, and the hospitalization itself to understand what is going on at this time.
The medical team mention that they have consulted the orthopedics team to discuss the potential need for a leg amputation at the hip. Mr. V's loved ones immediately react.
Mr. V's younger son does not think his father would want to live with this deformity. "He's so proud of his independence and his looks." Mr. V's common law wife agrees. "I don't think he could handle even a prosthesis."
Mr. V's older son says his father had once told him that he would be "ok living like that" after visiting a wheelchair bound friend with one leg severely weakened after a stroke. "I mean to me, an amputation isn't too far off a stretch from paralysis."
His daughter, who is not his biological daughter and is his common law wife's biological daughter, lives with him and his common law wife. "Do everything you can to keep him alive!"
The medical team should have first asked "all interested parties" - both currently present and not present - who would act as Mr. V's surrogate medical decision maker. They may now have difficulty reaching a majority agreement on who would speak for Mr. V.
If critical decisions had to be made in times of emergency, and there is no consensus on who speaks for Mr. V, the medical and surgical teams would most likely make the default decisions that favored prolonging life. Realistically, I have seen healthcare teams act according to the wishes of the most adamant person with the loudest voice. This person informally becomes the spokesperson. "Do everything you can to save him! I will sign the consent for surgery if he needs it!" frequently overpowers "I don't think surgery is a good idea. I'm not sure he would want to live without a quarter of his body."
I wish I could say the above scenarios rarely occur. Change the details regarding family members, illness, and treatment, and these two scenarios play out every day.
Do you remember the 70 year old gentleman who chose to "go with the flow" rather than name an MPOA?
The best case scenario is that his younger brother steps up during a medical emergency and answers the phone when the physicians call him. He listens attentively to what the physicians say about how his brother his doing. He deliberately asks, "Will this medical treatment or this procedure eventually get my brother to the quality of life he would want?"
Sometimes the best case scenario does not happen. His younger brother may pick up the phone and passively say, "yes" to everything the physicians say, never questioning the purpose of any of the treatments. His younger brother may pick up the phone and start communicating with the physicians, only to have their estranged oldest brother suddenly calling in and providing unhelpful, even contrary, input. Or, his younger brother may never pick up the phone.
"Going with the flow" means a person is giving up their say in how healthcare providers should treat their body at a time when the person is unable to speak for themselves. It means they are allowing anyone else to decide what would be acceptable quality of life for them.
Completing an MPOA form [read Post 19: Bringing Up Medical Power of Attorney (MPOA) Doesn't Have to Be Awkward - A Six Step Guide], and making sure all your surrogate decision makers have copies of the MPOA form, is the first step in ensuring that people who know what is most important to you and who know you as a person, not just as another patient lying in a hospital bed, make the important medical decisions for you during your most vulnerable moments.