Who Gets to Decide to Withhold CPR?

I’m not sure what I’d do if a patient collapsed in front of me and the administrator said, “No CPR. It’s our policy.” Since I’ve been a nurse, I’ve heard of slow codes, where the unspoken agreement is that if the person stops breathing the staff will purposely react as slowly as possible to give the person a chance to die, but I’ve never participated in one. The decision to either be resuscitated or be a DNR (do not resuscitate) is a personal one and the slow code takes that decision away from the individual. That goes against my philosophy of nursing.

English: CPR training

English: CPR training (Photo credit: Wikipedia)

Today’s news involves a nurse who did, in fact, stand by and refuse to do CPR when a patient went down. The facts seem simple. A woman collapsed in the dining room of an independent living facility. A nurse called 911 to report the incident. The 911 dispatcher asked the nurse to start CPR. The nurse refused, stating it was against company policy.

The 911 dispatcher didn’t give up. She asked the nurse to find someone who would start CPR, asking “Is there anybody that’s willing to help this lady and not let her die?” Again the nurse said no. The dispatcher continued to plead, as if the provision of CPR was the only surefire way to prevent this woman’s death.

Seven minutes 16 seconds later, emergency personnel arrived. The woman had no pulse and was not breathing. They started CPR.  The 87-year-old woman was declared dead at the hospital.

This has upset a lot of people. Upset some to the point that the police are trying to figure out if they can charge the nurse with a crime. The belief is that CPR would have saved this woman and the absence of CPR caused her death, and that’s not entirely correct.

According to Dr. Robert Shmerling in a post entitled, CPR: Less Effective Than You Might Think

“As opposed to many medical myths, researchers have reliable data concerning the success rates of CPR (without the use of automatic defibrillators) in a variety of settings:

  • 2% to 30% effectiveness when administered outside of the hospital
  • 6% to 15% for hospitalized patients
  • Less than 5% for elderly victims with multiple medical problems”

Another study that looked at out of hospital cardiac arrests found that successful resuscitation decreased with age. 40 and 50 year olds had a 10% chance of a successful resuscitation while patients over 80 only had a 3.3% survival rate.

No magic bullets here. There is no guarantee that CPR would have prevented this woman’s death. If she’d survived, there’s no guarantee of the quality of life she’d enjoy afterwards.

In this case, the independent living facility (not assisted living, not a nursing home, not a rehabilitation unit) maintains the residents are advised that in the event of a medical emergency staff members will call emergency services, but not provide CPR.  Employees are told the same thing.

The dead woman’s daughter said, “I don’t believe if CPR were done it would’ve helped or changed the result. This is not about my mother or me, this is about the policy of the facility, and we understood the policy, and I agree with what was done.”

Which brings me back to the original question. If the woman collapsed in front of me and, as a condition of living in the facility she’d agreed the staff wouldn’t perform CPR, would I have stood by and done nothing? With an underlying belief that the patient gets to make the decisions, I very well might have.

Not Dealing with Dementia

 

June and Ward Cleaver (Barbara Billingsley and...

June and Ward Cleaver (Barbara Billingsley and Hugh Beaumont). (Photo credit: Wikipedia)

Television moms and dads are kind, generous, clean, independent, and a source of wisdom. Real life moms and dads can be mean, self-centered, critical, and looking for a handout.  Such is the cards some children are dealt.

 

Dementia

Dementia (Photo credit: Fulla T)

These abusive moms and dads don’t miraculously turn into saints as they age, either. Most of the time the dysfunctional behavior they’ve exhibited worsens, rather than improves, as they age. If they’ve abused drugs, alcohol, or neglected their health, they may get much worse.

 

What to do when bad mom or bad dad (or both) are no longer functioning well at home alone? I don’t mean the not able to shovel out their driveway or lift the air conditioner out of the window type problems. I mean when they think strangers are coming in through the drainpipes and they think one of the intruders stole their gun. That scary not functioning well may be dementia.

 

Dementia is a broad term used to describe difficulties in the areas of language, judgment, behavior, thinking, and memory. Some causes of dementia, such as metabolic disorders and tumors, can be reversed. Other causes of dementia, such as Alzheimer’s disease, can only be slowed down, not cured. Repeat, not cured.  Pay careful attention to the part of the happy pharmaceutical commercials that caution,  “All patients will get worse over time, even if they take wondrous dementia drug.”

 

If you’ve had a great relationship with your parents, filled with mutual respect and assistance, it’s easy to say you’ll do whatever it takes to keep mom and dad safe. Even if it means moving them out of the home they’ve lived in for the last thirty years. Even if it means hiring someone to stay with them so they don’t burn the house down. Even if it means hiding the car or car keys to prevent them from driving to their favorite store that went out of business twenty years ago. Even if it means taking time off from work to accompany them to doctor’s appointments or leaving work early to rush home to deal with emergencies.

 

But if you haven’t had a great relationship with your parent, maybe haven’t even talked to them in five, ten, fifteen, or twenty plus years, what’s your responsibility when the neighbors start calling with their concerns? Do you forget the past and hope they’ll become nice? Put on your martyr uniform and hope for the best? Make an anonymous call to Elder Services and wash your hands of it?

 

There is no easy answer to these questions. Letting your conscience be your guide doesn’t mitigate the guilt that comes with the decision to keep your distance from a demented parent. If you decide to re-engage with the parent, there will still be the resentment that comes with putting your own life on hold to care for a parent who never cared for you. It’s an intensely personal decision that each adult child must wrestle with and decide based on all of the myriad considerations and individual details of their life. If you do decide to ride to the rescue, don’t expect the parent to be grateful for your efforts. Age doesn’t make people any less dick-ish, nor does dementia.

 

As someone who has wrestled with this issue, rest assured I don’t take my abandonment of my parent lightly. There’s a better than average chance that I am the best suited of my siblings for understanding and navigating the complexities of having someone declared incapable of making decisions to pave the way for admission to a nursing home. Not just because I’m a nurse, but also because I’m the oldest. Unfortunately I can’t forget or forgive the toxic parent-child relationship that ultimately ended with my decision to stop speaking to my parent over twenty years ago. I can’t let that go, even though part of me says it’s my duty and part of me feels incredibly guilty that I can’t caretake this person who can no longer caretake themselves.

 

I won’t deny that seeing my parent in their current state, even from a distance without saying a word or them being aware of my presence, breaks my heart. I wish I could find it within myself to soften, bend, and do what some would insist is the right thing. But I can’t.

 

And as much as I salute those who can, I acknowledge that there are those of us who can’t. Age and infirmity doesn’t turn a toxic parent into a saint, it only turns them into a old, sick toxic parent. Don’t judge me for turning my back.  It’s like they say when you fly, if the oxygen mask drops down, you have to put it on yourself before you can help someone else. Unfortunately my parent has demonstrated that they would suck up all the oxygen in my world if they could. As bad as I feel about their condition, I won’t let them.

Day 3: flight to Yazd - inflight safety card

Day 3: flight to Yazd – inflight safety card (Photo credit: birdfarm)

 

Will you still need me, will you still feed me when I’m seventy-four?

When my daughter was younger, she said she loved me so much that when I was old she’d get a wheelchair and push me wherever I wanted to go. Her sister said she’d push me off a cliff. I was in my early thirties when this conversation took place and since then I’ve wondered who will take care of me if I become old and infirm.

As part of my nursing education, I spent a fair amount of time in nursing homes. Afterwards, as a new nurse, I worked in hospitals. Both of these experiences convinced me that the majority of the elderly were frail, sickly, and unable to live on their own. It depressed me.

In the nursing home, the patients with dementia were the most labor intensive. One birdlike woman practically lived at the nurse’s station. She’d yell to each passing staff member or visitor, “Hey, lady. Hey, lady. Get me out of here. I have to go home.” Her idea of home was the home of her childhood and she’d often continue with, “my father will be mad at me. I’m late. Get me out of here.”  Sometimes I’d want to loosen her restraint and take her to this home that was still alive in her memory. Other times I’d sneak around so she couldn’t see me and ask me to help her. What I remember most is that no one ever visited her.

In the hospital, dying patients needed the most resources. Mouth care, turning and positioning, constantly assessing their level of comfort and providing medication were all involved in “aggressive comfort care”  as opposed to “comfort care only.” We knew we were fighting a losing battle, yet wanted to be proactive in preventing further complications and keeping the patient pain free. Sometimes family members would stand vigil, many times the nurses were the only silent witnesses to the winding down of a life.

It wasn’t until I worked in outpatient care that I realized many older patients were self-sufficient, active in their communities, and living at home without assistance. They didn’t need the services of a nursing home and, if they were lucky, the end of their lives happened in their home rather than in a hospital or ambulance. It gave me hope.

As my parents inch past seventy-five, I’ve also realized how many of the elderly live in their own homes and struggle to maintain their dignity while dealing with limited resources. There comes a time when you realize mom or dad isn’t able to manage their own life as they once were. I think that realization, for most children, is slow in coming and it takes even more time before the children try to step in and help.

Why is that? I think on some level we’re ashamed to acknowledge our parent’s physical problems. Intellectually, I understand that the elderly have a decreased sense of smell, touch, vision, hearing and taste. They may not notice the smell of spoiled meat, not see the stains on the dishes they’ve washed, not be aware of the loudness of the television while they’re talking on the phone, and eat the same food day in and day out. Their mobility is limited due to  loss of muscle, disuse, and degenerative diseases like arthritis. Their bowels don’t function as regularly as before. Their skin is easily damaged and slow to repair.

And most of us are busy, damn it. We have children graduating from college or getting married or having their own babies while we try to pay off parent PLUS loans, boost our 401k’s,  keep our marriages or relationships strong and maybe even find time to fulfill our own dreams. All this is going on while our parents start a slow decline and insist they can take care of themselves. They don’t want to be a bother.

So where do we put our time and effort? Into the problems we can fix. Babysitting grandchildren, advancing our careers, spending romantic time with our significant others, doing the things we always meant to do that we now have the time for. And the more our parents say they’re fine, we shouldn’t bother,  it’s no big deal, the easier it is for us to defer to their fine judgement and leave them to their own devices. I mean, really, they’re our parents.

Until the day we go over to their house and realize that they aren’t doing okay. They need our help. All of the things they did for us and taught us to do for ourselves have come full circle. They need help to wash themselves up and keep themselves clean. They need someone to monitor their meals and make sure they’re eating enough high quality food. They need someone to dry them off and look for signs of skin breakdown and intervene early. They need someone to clean their house, check the outdates on their food, and drive them to appointments. Much as they helped us to transition from dependent child to independent adult, we must now support them as they transition from independent adult to dependent parent. It’s not fun.

And for me, and I feel shame as I write this but I suspect others feel as I do, it is hard. It is hard to remind a parent to shower, to go to the bathroom, to wear a depends pad, to take their medications. It is hard because we now become the parents of the person who parented us. It is hard because we know deep down inside that our parents would never want us to see them as weak and in need of help so we must thrust ourselves into their lives and do it matter of factly and decisively. And we must somehow reconcile the parent of our minds, the strong, vibrant, healthy person we remember, with the person they have become from no fault of their own other than the passing of the years. And then we must love them and help them, all the while protecting their dignity and sense of self.

It’s a damn hard dance to do.

But still, I see adult children who do it every day. They stand by their mothers and fathers in the most intimate and embarrassing situations with a grace that doesn’t come from socioeconomic status or education. It doesn’t come from religious guilt or dreams of inheritance. It doesn’t come from a sense of obligation or duty or even payback. It comes from love.

And every time I see an adult child performing the most personal care for their parents with a smile and the attitude that it’s not a big deal, I am humbled. The question isn’t who will take care of us when we age, it is how we can do the right thing for the people who have done so much for us

Pat, August 20, 2011 - Curb

Pat, August 20, 2011 – Curb (Photo credit: pat00139)

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