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.
It’s not like what you see on TV. In real life, resuscitation doesn’t work so well. I’ve worked on many cardiac arrest calls in the past and almost 100% were not successful. In those few successful resuscitations, the person was left physically and mentally damaged. With your burden of disease, the chances of a successful resuscitation would be close to zero. The first thing they teach us in medical school is, “first do no harm.” If something that we are considering doing has questionable benefits but likely harm, we really need to think about it carefully. You have so much going on already, and the last thing we want to do is to make your situation worse. Some of our treatments could worsen things with little chance of benefit. If your heart or lungs were to stop working, we would not be able to bring you back. We would not perform CPR as it would cause you harm with no benefit at all. I don’t think you are at risk of having your heart or lungs stop just yet, but I have to be clear with you as to what to expect. I don’t want there to be any surprises between us. It’s not over yet. So let’s focus on making the most of your time. Let’s concentrate on something that will help you, treatments that can decrease your suffering, and make you more comfortable. Is there something that you have always wanted to do that you haven’t done yet? Is there something nice that we could help organise?
I was worried he would die before the day was over. When I first met him he was hunched over in bed, his jaw clenched tight, his upper teeth were grinding into his lower teeth. His breaths short ragged grasps. In extremis, with tears dripping onto the tousled folds of the bedclothes. His family’s faces replaced by masks of terror. The tension in the room was thick, the silence as we all held our breath as the patient grunted in agony. His wet eyes begged me to help him.
“Your pain relief isn’t strong enough. I’ll make some changes to get you more comfortable. I’m very worried about you. You might get much worse. Let’s work on your pain first.”
I headed off to prescribe the higher doses and to ask the nurses to prepare them for our patient. He was another classic haematology patient. His discharge summary had recounted the breaking of bad news the day before. There were no further treatments available to stop the blood cancer. The team recommended no further transfusions as they would not be helpful. The next morning the standard blood tests had been repeated, and no surprise, all the blood counts were low, including a platelet count below 10. This meant the patient was at risk of spontaneous bleeds. The medical teams reaction, was to prescribe a platelet transfusion. The hospice doctors who read the notes were confused by this action. How did the patient and his family feel? The day before they had been told no further transfusions, and then less than 24 hours later, he was being transfused.
Over the weekend we managed to control his pain and he spent some time with his family. The highlight was a visit from his children before they went away for a long weekend trip. I was surprised that his weekend went well. He spent more time with his parents and siblings and other family. He asked our staff what was going on, as he was unsure what the treatment plan was.
We’re not the driver of the journey. We are more like a GPS. We are here to help them in their travels. The driver is in charge of where they want to go and can indicate which route they would like to take to the destination. We are there to help highlight hazards along the way as this is a journey we help others with all of the time. We can point out obstructions or detours along the way. We can give a head’s up about what may be troublesome up ahead.
We don’t want you to have any surprises, we will advise you which route may be safer. The aim is for a smoother journey. You need to know what is going on and we will be there to help you navigate your way through foreign territory. We can map things out for you and will make useful suggestions. Whatever happens, we will be there for you and will do our best to understand and fulfil your needs.
Tell me what you need and we will strive to make things happen for you. This is an important final excursion that you are taking and we will be alongside you each step of the way. We know what changes to expect as we enter different phases of the trip. We are also there to provide support to the traveller’s loved ones to ensure they are kept up to date with each leg of the journey. To guide them through the transition points as everything continues to change.
All of the above is what you can expect from our self-caring rechargeable battery-powered Gentle Palliative Steadying system.
It was the second admission for our patient and it was going to be his last one.
He had been beautifully cared for by his family over many months, but the last week had been terrible. He was agitated, restless, and did not know what to do with himself. His wife wanted him to come back into hospice for end of life care.
On admission he was only semi-conscious, agitated and not able to talk clearly. His body was so unwell that his mind was no longer able to be lucid. Although he tried so hard to be there, it looked as if he was in-between two worlds. His family reported that he was seeing ancestors that had died previously.
I didn’t mince words and tried to be as clear to them as possible. No surprises!
He is so unwell, so exhausted. He is dying.
I purposefully used the word dying at least five times during the 15 minutes of my visit.