The new normal had been in practice for some months. Receiving chemotherapy, recovering from the treatment, then a short break before the cycle started all over again. It was the short breaks that she looked forward to the most, when they could be free from feeling really unwell, almost normal again. Apart from the changed taste buds, and unrecovered appetite. At least they could enjoy each other’s company and smoke their favourite cigarettes together. Although they came from vastly different backgrounds and family origins, they had been amazed that they had so much in common. “In sickness and in health,” they had said as a part of their wedding vows, and he had certainly fulfilled his part. The doting husband, always there to help, he had never missed any of the appointments. He would text or call her from work during the day. She really needed him during the weeks after chemotherapy, these were her low periods when she had never felt more unwell. At times she almost didn’t want to start the next cycle, but he managed to convince her each time. That this was something that they would be going through together. His devotion had kept her going throughout the tough days and nights. Even in the midst of illness she felt blessed as he was standing by his woman.
It was the week after cycle four, they were just about to enter the recovery phase, and had planned to take a small trip to their favourite beach. They hadn’t been since last summer, things had been too hectic. This would be their chance to get away from the city, and their problems. He had gone to work as usual, he had prepared her breakfast before leaving, allowing her to sleep in. It was getting close to lunch-time and she was looking forward to saying good morning to him, he’d usually call her during his lunch break. No call came. Strange. She texted him but there was no reply. She noticed that there was a message on their answerphone. She listened to the message, it was his boss. Asking her to call him. What’s going on? What’s happened?
Childhood had not been a happy time for her. Somehow she had survived to adulthood, and she was able to make her escape. Moving to another country, eight hours flight away. Leaving her family history behind her, she embarked on her new life. It wasn’t easy to start with, the language barrier especially hard with English being her third language. She worked hard at her job, and took extra English lessons. She made good friends with a bunch of ladies, the sisters that she had always wanted. For the first time in her life, she thought she was happy.
That all changed one fateful night, she was out with her girls, and he was out with his boys. They met each other and both of their lives changed. They had found the loves of their lives, and what she thought was happiness before, was nothing compared to what they were like when they were together. A fairy-tale romance, she had found her prince, they soon married. He was seven years younger than her, but it didn’t matter, his family accepted her as one of their own, she had found out what the real meaning of family was.
As a little boy his mum would always sing his favourite nursery rhyme to him, as part of his bedtime routine. He was her little star.
We had admitted him only the day before, and we thought that he only had days left to live. End-stage disease had wreaked havoc on his body, and was starting to impinge on his mind. What was important to him? Family above all, his children, his siblings, his parents was whom he spoke about. He was uncomfortable and needed extra medications to control his various symptoms. He told us that he knew his time was short and that his family would be trying to spend as much time as possible with him.
Following the weekend there were less family members around. His mother had become acutely unwell, and the hospital had also found end-stage disease. They made a referral to see if we could admit her as well. The family had to split themselves, with one half holding their vigil in hospital, and the other half holding their vigil at the hospice. Never the twain shall meet?
A no-brainer from my point of view. Let’s reunite the family, dying son could then see dying mother. A really sad situation, but at least the whole family could be together for both dying family members. Quick logistical arrangements were made and the son was shifted to our largest room. This would allow both beds to be in the same room as each other at times. So that they could all be surrounded by their family members.
No-one could lessen the tragedy of the life event, but at least the family didn’t have to split themselves in two, trying to hold a vigil at two places at once. The overall stress was relieved a small amount as they accompanied their loved ones in their final days.
The son set after two more twilights, and his mother would only experience three more sunrises before her light dimmed for the last time. The family planned to hold a combined funeral service in which many stories would be highlighted, and the warm glow of love would be shared.
Twinkle twinkle little star How I wonder what you are
Over the years I have noticed that when it comes to reunions of significant others that there can be a number of different outcomes. If someone has had to hang on, having reached the reunion might be akin to mission accomplished, and the person can deteriorate quickly after the meeting. Or else the person may receive a boost from the reunion and somehow it provides energy for them to carry on living, much longer than is to be expected.
The latter was the case with our patient, I knew that he was a strong man, with an unshakeable faith and strong willpower. I was surprised to learn from my Island contact that after the arduous journey our patient only stayed one night at the hospital, and was discharged the next day to his family’s home. What is it about the human spirit that can make it so resilient? The science can’t explain it, it is one of the mysteries of life. The importance of human connection, can keep you going, or bring you to a complete stop.
His prognosis had always been limited as he was very unwell throughout. The joy of reuniting with his siblings and their children really gave him a boost. 27 days he lasted before he died, which was impressive, and also fortunate as we could only provide him with 30 days’ worth of medications. He died just before he would’ve run out of his crucial medications.
As the rest of the passengers vacated the plane and went through in my head how to reassemble the collapsible stretcher that I would use to carry him off the plane. My patient had limited mobility and would not be able to help much in the transfer. I would have to reassemble the stretcher around him. As the final passengers left the plane I prepared the stretcher. Putting the left side down on the bed underneath his back, underneath the bedsheets as I had been instructed. I then asked him to roll towards me on the other side, which he was able to do, whilst I placed the other part of the stretcher underneath his other side. Hmm, there’s supposed to be a clicking sound as the pieces snap together. Why isn’t there a clicking sound?
I felt for the location of two pieces underneath the patient, Oh they are slightly misaligned. A slight shove upwards of the right side piece and CLICK it went into place. Okay just need to put together the head and feet components, then strap the patient in. By this time four burly porters had made their way to our seats, ready to help carry our patient off the plane. I gathered my medication bag and other equipment and we walked down the aisle to the back of the plane.
His lips were blue and his breathing had become erratic as we had reached cruising altitude. I measured his pulse oximetry again, it had been 95% on the ground, now it was 89%, and his heart rate was 120. I attached the tubing to the oxygen cylinder and then placed the prongs into his nostrils. His readings started improving and his lips returned to their usual colour. He had nausea and I gave him an anti-nausea injection. I asked him if there was anything else he needed, he shook his head. He was exhausted and in a few minutes he fell asleep.
Although I had already been a doctor for 13 years by this stage, working on this medevac flight was different to what I was used to. As doctors we usually see our patients briefly. The longest time we spend is usually during the admission process, we might spend 30 to 80 minutes seeing the patient for the first consult. In the hospital/hospice setting further follow-up visits are usually short, maybe 5 to 10 minutes. The rest of the time between visits the care is provided by the rest of the team, especially our nursing colleagues. So it is possible that during a week long admission, that a patient might only be seen face to face by their doctors for two hours or much less in total.
During the flight it felt like I worked half a nursing shift. As an untrained beginner nurse I kept an anxious eye on my patient. My head was constantly tilted towards him, watching his chest moving up and down. Making sure that he was still breathing steadily. He awoke halfway through the flight in pain, and more pain relief was administered. He stirred a few more times, as if he was having a bad dream. All throughout the four hour flight I checked on him at least once a minute. This was an exhausting vigil to maintain driven by my own anxiety more than anything else, one on one nursing is hard work. We were getting closer and closer to his home. I silently willed him to hold on a bit longer, that he’d be able to see his family soon.
I didn’t sleep well that night because of a mixture of emotions; excitement, fear of failure, what if he died on the way over? Would he be comfortable? How is it going to go on the flight? Will I be able to reassemble the stretcher myself? What is going to happen to his abdominal abscess at cruising altitude? Fluid expands at lower atmospheric pressure, that could cause more pain and possibly rupture. What if he needs to poo?
A fitful sleep followed by an early start to the next morning, I woke up at 0430 as I had to be at the hospice by 0530 for a 0600 ambulance departure. I arrived at the hospice for last minute preparations. Medications had been prepared for the flight and I had plenty of pain relief, nausea relief and distress relief medications pre-drawn into labeled syringes.
Okay, everything checked off on the list. Deep breath, I’m as ready to go as I’ll ever be.Hmm, why can’t I stop pacing?
At 3pm on Friday afternoon, 18 hours before our departure time, I received bad news. The promised community raised funds had not come through. Was the trip to be cancelled because of a deficit of $3320?
I finished the phone call and took a quick walk around our inpatient unit, and talked to some of the staff about the funding problem. One of the nurses asked me what I was going to do. I really had no idea but for some unknown reason I replied to her, “Magic.”
I had 120 minutes to come up with $3320, at a rate of $27.67/min. What to do? What could I do? What was on the line was a dying man’s wish to return home to see his family. This was his final chance to try to get home, he had been trying to get home ever since he had arrived here months ago.
Who could help? Maybe a virtually community of practice? I went online and decided to launch my first ever crowd-funding campaign, asking people to pledge money towards the trip deficit. The original post can be read here. I emailed a link to it to everyone that I knew.
17 minutes later the first pledge came in, then another, then another. Drip by drip the pledges came in. $20, $40, $100, $200. Palliative Care people were keen to help including healthcare staff, administration staff. People from around New Zealand and Australia came to our aid. One of the other patients on the ward caught wind of what was happening and pledged $200 to help his fellow patient get home.
With only five minutes to spare we reached our goal, the trip was going to happen! I went to see our patient and his wife and told them that I would be seeing them early tomorrow morning for our trip back to the Islands.
What a disaster I thought, as I listened to the referral. A 44 year old man had become unwell in the Pacific Islands and had been urgently transferred to New Zealand for assessment and treatment. He had an abdominal mass lesion which was extremely painful after having had massive weight loss over the previous two months. He had been a great orator and had been destined to be a future leader of his church. He was married without children.
He and his wife had come over two months ago and things had not been good at all. He had been diagnosed with a large abdominal mass found to be cancer with spinal cord compression and lung metastases. The impression was that there was nothing that could be done medically for him, and that he should try to return back to the Islands as soon as possible as his condition would likely deteriorate quickly.
Travel arrangements were made for him and his wife to return back home in the following week, but he became acutely unwell before he could finish arranging his journey. A difficult situation, thousands of miles from home, with little in the way of family members or support locally. Displaced, stuck, and also critically unwell.
I’ve been practising Mindfulness meditation for the past seven years and I feel that it helps me to tune into my patients’ situations better. I still do my usual alcohol hand rub routine prior to entering each room, to bring myself into focus, to be present in the room.
I need to take in the whole atmosphere of the room, who else is in there, how are they interacting with each other. What is the emotional temperature of the space. It might be an inpatient room, an outpatient clinic, a hospital room, or at a patient’s home that I find myself.
A quick survey of the environment prior to beginning the assessment proper is useful. You look for extra equipment in the room. A commode chair can indicate difficulty with mobilising. Monkey bars or bed levers may confirm restricted independence. Is there equipment in the room, like oxygen tubing, oxygen concentrators, nebuliser or suction systems. Are there any hand held devices such as inhalers of sprays that the patient could give to themselves? Any walking aids? A sensor mat would indicate confusion and possible delirium. Not safe to transfer independently. Urinary catheter bags and tubes, and other drainage devices.
With observation alone you can find a lot of information, even before speaking to them. All of the above is assessed within the first 30 seconds of meeting someone. You also check out their visitors at the same time.