Wednesday, 27 June 2018

Care Partner Wednesday--Pneumonia

In the morning, Ruby got up with the help of her care partner at the facility where she lived. In the dining room, she ate toast and eggs, drank her prune juice and the imperative cup of coffee. Mid-morning, her son and daughter-in-law came to visit. They took her for a walk in her wheelchair, and she was happy to have the time with them. They left at 11:30. At lunch, Ruby didn't look herself. She was pale and hanging her head, and said she didn't want to eat. Helped back to bed, staff monitored her. By evening, it was obvious she had pneumonia.

How can things change so quickly? How can someone who looks fine in the morning be so sick by evening? This isn't unusual. Frail elderly people often have multiple conditions they are dealing with, and even a small infection can be the tipping point into serious illness. It can happen quickly.

"Sir William Osler, sometimes called the father of modern medicine, famously called it "friend of the aged"(often referred to as "the old man's friend") because it was seen as a swift, relatively painless way to die. But that was over 100 years ago. Today vaccines, antibiotics and improved supportive care mean doctors can do a lot more about pneumonia, although it remains a major killer, capable of thwarting the best efforts at prevention and treatment." 1

Why are elderly people so susceptible to pneumonia, and why is it so dangerous for them?

  • An elderly person may not recognise they are sick. They are used to feeling unwell and symptoms like a cough or chills may be something they experience with other conditions. Perhaps they often cough with congestive heart failure and feel cold on the warmest of days. How would they know they are experiencing symptoms out of the ordinary?
  • Their bodies are often weakened by other conditions, making them more susceptible.
  • Many are undernourished. They don't feel hungry so they don't eat enough.
  • Those who have trouble with chewing or swallowing are prone to aspiration pneumonia.
  • When people are living in a community, such as long-term care, there are more likely to be germs. 
  • Even if pneumonia is treated successfully, statistics show that an elderly person may get it again in a few months, for all the same reasons they got it the first time.
Surely pneumonia isn't the threat it used to be. We have antibiotics.

Pneumonia is still a serious threat to a frail elder. Because it can spread so quickly, it needs to be caught immediately. Many elders are on multiple medications to control other conditions. Their livers and kidneys are not able to metabolize drugs as well as when they were younger. Adding another, sometimes strong antibiotic to the mix can have serious consequences. Sometimes, the elder is too frail to fight.

There are times when the best decision is not to treat pneumonia.

If all indications are that the body is shutting down, if there are multiple medical problems and each day is a struggle, then this may be a decision a care partner has to make. It's heartbreaking to be in that position.

The time to discuss this isn't when your elder is sick, but months and even years earlier. It's not a one-time discussion, either, but one that needs to be revisited. Because as difficult as it is for a care partner to decide, it's worse if they have no idea what the elder wants and no way of finding out.

Talk about it. Today.

NEXT WEEK: Levels of care and sending to hospital



Wednesday, 20 June 2018

Care Partner Wednesday--If My Heart Stops Beating

"If your heart were to stop beating as a result of heart attack, stroke, accident etc., would you like it restarted by the use of cardiopulmonary resuscitation?"

It seems like a no-brainer. Duh--yes. Obviously, I need my heart to be beating to live. So, yes.

It's not that simple. There are facts about CPR you may not know and implications you may not have considered.

"CPR stands for cardiopulmonary resuscitation, It's a life saving medical procedure which is given to someone who is in cardiac arrest. It helps to pump blood around a person's body when their heart can't. To carry out CPR, a person presses up and down on the casualty's chest (chest compressions) and gives them a series of rescue breaths to help save their life when they are in cardiac arrest. A cardiac arrest is caused by an electrical problem in the heart. The electrical problem causes the heart to stop pumping blood around the person's body and to the brain." 1

Should you have CPR? The answer to the question is, it depends.

Side effects of CPR are many. It's not like medical television shows, where the person wakes and begins to talk. Minor side effects are bruising and broken ribs. These are painful and uncomfortable, but not life altering in the long run. Far more serious is possible brain damage or stroke. These can leave the person in a worse state.

CPR is most effective when the person it's given to is generally fit, has had no previous cardiac issues, is not elderly and doesn't have other serious medical issues. Emergency services must be called immediately, the procedure must be done correctly and emergency response must be quick. Even with all these factors in place, there is a significant number of times where death or severe impairment occurs within a few weeks of the event.

What does this mean for care partners?

It's a sobering responsibility, but a DNR or "do not resuscitate" form must be considered. In Ontario, this is a government form that is numbered and must be signed by a doctor or other medical authority who has had a discussion about it with either the patient or the power of attorney. As a care partner, you need to understand the implications of resuscitation, and what it could mean for your elder. If they are able to understand, you need to discuss it with them. If not, you need to make the best decision you can, based on what you know.

I used to think a DNR was at worst, a form of suicide, and at best, a giving up. I understand better now. The reality of modern medicine is that we are forced to make decisions that weren't an issue 50 years ago. If you are sent to a hospital, they are mandated to save your life, unless you have paperwork that states otherwise.

What do you think?


Care Partner Wednesday--If My Heart Stops Beating

Wednesday, 13 June 2018

Care Partner Wednesday--Comfort Feeding Only

"I want some chocolate ice cream." 

My co-worker, Melissa was startled to hear this. Paul was at the end of his life and had lost all interest in food. Although he could still swallow, he hadn't had anything to eat or drink for several days, and staff had been instructed not to offer anything. Melissa wasn't sure what to do.

"I want chocolate ice cream," he said again. Quietly, Melissa went to the kitchen and filled a small bowl. Returning with it, she couldn't keep herself from checking the hallway. Would she get in trouble for this? She stole into the room and handed Paul his ice cream. With shaking hands, he took a spoonful, and then another. The flavour burst in his dry mouth and a smile stole over his face. After two bites, he set the bowl aside. That was enough.

Paul had been an ice cream lover and a chocoholic all his life. In his later years, his diabetes had restricted access to many of his favourite treats. As the ice cream melted on his tongue, whole worlds of pleasure filled him.

There is a sidebar to this story. Paul's daughter found out about the ice cream, and Melissa did get in trouble. She received a tongue-lashing for "unnecessarily prolonging his life." Years later, Melissa was glad she'd gone for ice cream and would make the same decision today. 

Comfort Feeding Only is given around the time end-of-life is declared. For the most part, the loved one has lost all interest in food, and may no longer be drinking, except for small sips of water or ice chips. The goal of CFO isn't nutrition or even sustenance, but to provide comfort. A few mouthfuls of warm soup, a taste of chocolate cake, a little of a favourite meal, or ice cream. The purpose of the food is to invoke happy memories and reminiscences or bring the joy and pleasure of a loved flavour. It's to bring comfort and the social aspect of sharing it with another person. It's not to provide sustenance or hydration, and it won't prolong life. 

A few weeks before Bill died, he expressed a desire to have lobster. I'd never cooked a lobster in my life and had no idea how to go about it. For him, though, this was reminiscent of a trip he took a few years earlier to the east coast. He'd visited a beloved guitar teacher, taken a ride on his boat and eaten lobster. The memories were wrapped up with the tastes in his mind, and he wanted to revisit it. I remembered a grocery store where I had seen lobster on ice, so I visited and found a sympathetic man in a white apron who gave me detailed instructions. Before leaving the store, I bought all the special picks that Bill would need to get into his treat. Back home, I followed the store clerk's instructions to the letter and presented Bill with the finished product. It took him over an hour, but he finished every bit of that tiny lobster. A few weeks later he died, and I've always looked back on that meal as one of the most important I ever cooked.

Care partners and other family members sometimes find it heartbreaking when someone they love isn't eating. It's hard to watch. It's important to know that they don't desire food for the most part, and aren't experiencing hunger and thirst. This is a natural process for the body to shut down.

Last week we talked about feeding tubes, and why they aren't recommended. What about intravenous fluids? 

There are so many reasons not to do this. 

  • The fluids aren't absorbed well and may cause chest congestion, making it difficult to breathe, or swelling and leakage in the extremities such as legs and feet.
  • Someone who is confused may try to pull out the IV.
  • IVs can easily get infected.
  • If the person is still able to move around, this decreases their mobility.
  • It's unnecessary.
Instead of invasive medical treatments that don't prolong life, and may increase discomfort, why not consider a couple of spoonfuls of chocolate ice cream?


Next week--What is a DNR, and should I have one?

Wednesday, 6 June 2018

Care Partner Wednesday--When Food Is No Longer Possible

When Bill was dying of heart disease, I didn't know he was dying.
He was palliative and nearing end-of-life, but I didn't understand those terms, and no one explained them to me. Perhaps because he was only 55, every medical person was full of hope until all hope was gone.

One disturbing symptom was when his appetite waned. He always enjoyed his meals, and especially his desserts, and he had a small pot belly to show it. Gradually, what would be a normal serving for him was too much. Half his meal would get thrown out, and eventually, he'd stop after a few bites. "Sorry," he'd say, and I'd reassure him it was fine.

But it wasn't fine. I laid awake nights trying to think of things he would enjoy eating. "If you don't eat, you'll never get stronger," I argued in my head. I cooked small portions of special treats, but nothing helped. The weight fell off him, and in a few months, he looked skeletal.

What I didn't understand was that this was his body's way of shutting down. It didn't need nutrition in the same way because the internal organs such as liver and kidneys were not able to process them effectively. This is the time to look at comfort feeding, something we will discuss next week.

In an elder, there can be a slow decline in the ability to chew and swallow. It may be related to tooth loss, but more often, it's due to inability to swallow effectively. The risk of aspiration pneumonia is high, and each spoonful must be given slowly, waiting to see that the last one has been swallowed. Often, the diet is changed from regular to minced, soft diet or even pureed. Fluids need to be thickened, as elders dealing with this continually choke on thin fluids. Sometimes, high protein supplements are added. Because food that is minced or pureed looks less appetizing, less is consumed.

For care partners, it's a heart-breaking time. Watching someone you love waste away is both frightening and frustrating. Everything inside of you wants to do something to fix the situation. "I can't just let him starve!"

And so, because we live in an age where amazing medical interventions are possible, someone might suggest tube feeding. This is when a tube is surgically inserted into the stomach, and liquid nutrition is given. Tube feeding was developed to be used short-term in people with medical conditions that are treatable. It was never meant for elders at the end of their lives, in a palliative state, with no hope of recovery.

It may look like a solution to a serious problem, but it comes with serious problems of its own.

  • sometimes the nutrition isn't absorbed properly because the organs are in the process of shutting down and can't process it (that's a non-medical way of explaining it.)
  • some people get severe diarrhea.
  • the insertion of the tube can be painful, and someone with dementia may try to pull it out.
  • the tube frequently gets blocked, which may necessitate another trip to the hospital.
  • the social, taste and pleasure aspect of food is lost forever.
The realization that your loved one can no longer eat or drink is gut-wrenching because it's a clear marker that the end is near. The temptation is to look for miraculous answers. But the truly miraculous answer is to stay close, to hold their hand and to walk with them through this journey to the end.