Most hospice inpatient units will have do-not-disturb signs available on each patient’s door. It can be hung out by the healthcare team when a patient is being assessed or if something is being done, e.g. patient bathing. It is used to indicate to other people not to come in as the healthcare team is busy with the patient. This is in contrast to most hospital settings I have worked in that do not have these signs available for use. Closed curtains around a bed do not stop people from barging in. Privacy can become a distant memory.
Are do-not-disturb signs patient-centric or staff-centric tools? Could a patient and their family be empowered to use the signs when they want some privacy? Intimacy is not encouraged in clinical spaces but may be something which is deeply missed. Could a more patient-focused do-not-disturb sign be created? A time-out-please sign. The patient might want to have an important conversation with a loved one. They might want some time to themselves away from the healthcare staff. They might want to do things that represent normality to them. When time is running out it becomes precious and I would like people to spend their time in whatever way they choose.
In the approach to the finish line, there is an acceleration. Bad things start happening faster and faster. One physiological insult after another. The body just can’t keep up with the relentless series of assaults. Nature is trying to take someone out. Symptoms that are already present worsen. New symptoms develop and cause more suffering. There is only so much a person can take, no matter how strong a fighter they are. The mind and spirit may still be strong, but the flesh has become weak.
The family urge them to hang on. They are trying their best but there is little to hold on with. They are slipping away from our world. They are dying and there is nothing humans can do to stop it from happening. It is up to higher powers now, it is out of our hands. We can make people more comfortable but we can’t save every life. There’s just too much going on, too much going wrong.
I’m worried that time has become really short. There might only be hours to short days left to live. I’m worried they are suffering, that they are really struggling. We want to make them as comfortable as possible. Medication changes could make them more comfortable. The main side effect is sleepiness. At this stage of things, even if we took away all of the medications they would still be sleepy but would be very distressed. If they are distressed this will make you all distressed.
I’m sorry this is happening. I need you to know what is happening and what is going to happen. I can’t let there be any surprises between us. Yes, please talk amongst yourselves. I’m happy to come back later to discuss this further. I just want you to know that we are looking out for their best interests and that their comfort is our top priority. We’re going to get them through this, we’re going to get you all through this. Please let us know if you need anything.
That’s right, anything that you swallow will probably come back up again. It’s a mechanical obstruction and our medications won’t be able to keep it unblocked.
There’s no other treatments?
We could try steroids to see if it could lessen the cancer swelling, to see if it would loosen up the blockage. It may not work, and even if it does work it will only work for a short time. And there can be side effects. Some people become more agitated, it would worsen your immune system so it would be easier for you to get infections.
Hmmm. I need to think about it
That’s fine, I wasn’t expecting an answer right now. We will keep checking in with you, we want to make sure we do right by you. When you are very unwell the body had difficulty keeping things in balance. For example physical balance can be affected and it mean you are at greater risk of falling. That’s why we’ve been nagging you about not walking by yourself.
Nod.
I know you want to stay as independent as possible but we need to keep you safe. I don’t want you breaking a bone, you’ve got enough going on already.
Sigh.
The illness can also affect your mind balance too, you’ve probably had some trouble remembering things.
My memory has been bad for months.
And overnight you were a bit confused.
Yeah, I wasn’t sure where I was.
The strain and drain on your body from the cancer is causing it all. I know you’re trying your best to be yourself, but it’s becoming harder and harder. Things are becoming a struggle for you.
Nod.
I don’t want you to struggle. Please let us help you with some things. To try and free up some energy for you. So you can spend time with your friends and family.
They keep encouraging me to do stuff, but I’m not sure I feel up to it.
Listen to your body, if you feel up to it, go for it. If you don’t it’s okay to have a rest.
Nod.
Okay we’re going to work on your nausea today, and we’ll check in with you again tomorrow morning about the steroids. I just want you to know that no matter what happens we’ll keep on trying to make you more comfortable. There might come a point where you aren’t able to speak for yourself and I just want you to know that we will act in your best interests. We will always try to make you more comfortable.
Thanks Doctor.
You’re welcome. We’ll see you later. Please let us know if you need anything else.
She had become sleepier over the course of the week. She would still rouse to voice at times. Her eyes would open for a few seconds and then close again. A few days ago she was still talking but her voice became weaker as the days passed. It was becoming harder to understand her and then she stopped talking.
She had been unresponsive two days ago and would only make occasional sounds when being washed or turned in bed. This is what happens as a person dies, they become less able to communicate. She had gone into a coma.
We encourage people to say what they need to their unconscious loved ones.
“They can hear you and understand you. They will try and respond but may not be able to do so anymore. Tell them what you need to.”
The nurse was talking to the husband about who the patient had wanted around.
“She wanted her friend to come and visit.”
“I think she is too unwell now, I don’t think she should come over.”
“But she specifically had asked for her to come.”
“Doesn’t matter. I’m in charge now.”
Immediately from the bed came two sharp coughs.
A phone call was then made and the friend visited later in the morning.
I get halfway through making lunch then I have to rest. When I finish making it I have to rest again before eating.
Heh, my only entertainment is going to the lavvy. And that’s no fun.
Every time I move I need to go to the toilet. Nothing much comes out and it’s exhausting.
Sometimes I make a mess and that’s even more stuff to clean up. I don’t have the energy.
COVID. I thought it would be the end of me. I was almost disappointed when I recovered.
Don’t get me wrong, if I wasn’t sick like this I’d be happy to continue living, but I have these illnesses. Nothing is going away, it’s only going to get worse.
I don’t want to be here any longer than necessary. This is existence. Not a life.
Blood transfusion? What’s the point? So I can live longer to get worse?
No, I wouldn’t want you to treat a chest infection. Yes, Let nature take its course.
She was dozing off in her chair and her partner answered, “She’s okay, just really tired.”
“You had a lot of pain last night, you still look sore at the moment.”
“No, she’s not in pain, sometimes her face just looks like she’s in pain. She’s pretty good at the moment the cancer lumps in her tummy were sore before, now they are okay.”
“You were on the pump before, did it help your pain?”
“Yeah, it did help my missus’s pain, but then we went to the traditional healer and he told us to stop the pump. Since then the pain hasn’t been as bad as it was. We stopped the pump last week.”
“You’ve needed seven extra doses since yesterday. I’m worried we aren’t controlling your pain enough.”
“No, you are doing all right. My missus will tell you if she needs more. She wants to call the shots.”
“How long you guys been together?”
“16 years.”
“Cool, how did you meet?”
“At church. She was a church girl, me I was a wannabe gangster. My missus straightened me out. Now I’ve become a workaholic, I work for my family, that’s the most important thing for us. To give our kids a good upbringing.”
“You guys make a good team.”
“It’s my missus, because of her I changed for the better, it took her five years but she sorted me out. She’s my boss.”
“Were you guys scared of hospice before you came in.”
“Yeah, we tried not to come in for the last couple of weeks. We wish we had come in sooner. She hates the hospital. She wasn’t sure about hospice.”
“Are you still scared of hospice.”
“Nah, it’s a good place, you guys are taking good care of her, and the whole family. We feel safe here, you guys listen to us. In the hospital they just kept giving us bad news, and then more bad news. And just when we thought we’d heard it all, even more. My missus just wants to make the most of each day, but we know how unwell she is. This place would be a good place to be at the end. She feels safe here, you guys treat us really well. We are still praying for a miracle.”
“You keep on praying. We just want to try to make her more comfortable. I think we could do better with her pain control, we may need to start the pump up again.”
“My missus wants to stay off it, but if things became too bad, if you thought she’d really need it, it would be okay to start it again.”
“Okay, we’ll try to keep her off it, try to do things her way as much as possible, but if things get really bad, we’re not going to let her suffer.”
“Yeah I just want her to do what she wants.”
“Do you have any questions?”
“Yeah. Do you think you could help us, ummm, we’ve been together a long time, and we had planned to get married last year in our backyard. But then she got really sick, and ended up in hospital, again and again. Do you think you could help us arrange for someone to come in to marry us? We just want it simple.”
“Yeah sure man, we can help, it’s been a while since we’ve had a wedding here. We’ll get the team going, we’re all keen to help. Just remember it’s your wedding, not ours.”
“Thanks, maybe if we get married then she’ll have a miracle.”
The hospital palliative care nurse called me to refer a lady in her late 80s who prior to admission had lived independently until she started falling over. It was minor slips with minor injuries, then moderate trips with moderate injuries. In the past week she had a major fall, resulting in life-threatening injuries. Hospital tests showed that her chemical balances were all out, that a lot of bones and organ tissue had been replaced by cancer. The reason that she had lost her physical balance was that the cancer had invaded her spine, crushing the spinal cord and rendering her lower body weaker and then paralysed. She could no longer move her legs, but unfortunately could feel pain, and in fact her legs had become hypersensitive to pain. The bundle of nerves that make up the spinal cord do not like being pushed on, and scream out in protest.
During her week in hospital she had almost died twice. Each time, somehow she had recovered. Each time she was left devastated that she had recovered. From being fully independent, she had become fully dependent, a situation that she found impossible to tolerate. She had some stern conversations with The Almighty, she was not happy with what he had chosen for her. Her beloved husband had died over 30 years ago and there wasn’t a day that she didn’t think about him. She wished to be at his side again.
She asked the nice hospital palliative care nurse about the assisted dying service that she had heard about. Printed information was provided which was read and digested, with some difficulty as the pain in her legs and bottom still bothered her despite the pain relief she was given. She thought that she would qualify for assisted dying, having met all of the eligibility criteria and still maintaining her decision making capacity. The palliative care nurse said that no-one in the hospital provided the service, but that a referral could be made to the Ministry of Health in order for them to assign a practitioner to her. A process that would usually take two to six weeks to complete. Her ward team made the referral to the national service.
In my misspent youth I studied Economics during high school and into my first year of university. Opportunity Cost is the cost that you incur when you make a choice. Because you have chosen A, you miss out on B, or vice versa.
The New Zealand school ball is an important event in a young lady’s life it is a coming of age event. The proud parents will see their daughter off for her first school ball. This can be a big deal especially for the father. The ball was scheduled to take place in a week’s time. Our patient had his blood tests done as he was looking pale, was fatigued, and slightly short of breath. Symptoms and signs of anaemia, low red blood cells in his body. His counts were dangerously low, and if we didn’t do something about it, he was at risk of dying before the day of the school ball. He really wanted to be there for his daughter, it was his only chance at providing the whole family with this milestone memory. He agreed to our plan of transfusion, a top up to give him the best chance of being there for his daughter.
In the days after the transfusion he was able to walk further without losing his breath, his thinking had sharpened, almost as good as normal. Looking in the mirror his skin tone no longer reminded him of the vampires from the Twilight series that his daughter and her friends all loved. He would make it to the ball, and the whole family was excited about it again. They could proceed with the pre-ball party at home, he would go home for a few hours of leave. A nice dose of normal family life to break up his cancer story if only for a brief respite.
After the weekend the pre-ball photos were shared with us, and they were lovely. The only clue to his illness was that Dad was thin, and looked tired in the photos, otherwise a beautiful New Zealand family celebrating a special night together at home. A snapshot frozen in time, if only the image would stay like that, no changes occurring, no one deteriorating, no brightness fading from their eyes. But that is still life, real life is about the changes that occur with each passing minute, hour, day, week.
She was transferred from hospital into hospice at the end of her life and only had days left to live. End-stage cancer had taken complete control of her body. We were handed over that it was important that we respect her wishes especially when it came to calling her by her proper name. It was a name that she had to fight for, that she had won for herself, but at great cost.
Not everyone understood her wishes. When her relatives came to see her they brought old family photos, and called her by a different name. She looked different in the photos, much younger, and dressed in different clothes. We were all young once. She was becoming less responsive as each day passed and her family talked about someone who sounded different to the patient that we had only a short time to get to know.
He was admitted because of uncontrolled nausea and vomiting. We thought it might be a malignant bowel obstruction but his bowel sounds were normal. He would vomit at least three times a day. Strangely the vomiting didn’t seem to bother him, in fact at times he and his wife seemed happy after he vomited. We weren’t sure of what was causing his nausea and vomiting, his blood tests showed evidence of dehydration, but there was nothing obviously reversible going on to explain his symptoms. He looked unwell and after a few days on our ward he appeared more gaunt. Our attempts at controlling his symptoms were not working, we hadn’t solved the mystery yet, until we noticed the half-filled blue glass bottle on his table. “Keep out of direct sunlight.”
palliverse.com 