I became the GP of this charming lady, Rose and her astute husband Louis at the turn of the century in a small village in rural Queensland, Australia. Indeed a colourful and most interesting couple. Salt of the earth they were...
Time swiftly passed. Louis was buried and Rose, at the age of 89yrs deteriorated with dementia. Soon she was cared for in the High Care Unit of a Rural Aged Care Facility (RACF). The main problem in the otherwise physically healthy Rose became dysphagia. She aspirated (breathed into her lungs) small amounts of liquid on several occasions and things became complicated. Despite insufficient food and fluid intake, Rose would clench her teeth when food was introduced through her lips. She would then blow fiercely spraying the room and the carers with liquid food.
One day Rose was admitted to the local hospital for aspiration pneumonia (lung infection due to breathing in liquid food into her lungs). On discharge from hospital the instructions were issued to implement palliative care for Rose due to the inability to feed her sufficiently and safely. The staff were happy about the management plan because they interpreted Rose’s behavior as an indication from Rose that she wanted to die.
Rose’s son received the news in the city 1,500 km away and immediately phoned me. “What is palliative care?” he asked. I explained that it means that all active medications and interventions are stopped. Rose would be made comfortable, they would ensure that she is pain free and she would be allowed to pass away in peace, I explained.
Ron was not impressed. “But if she is not sick what is she going to die from?” he asked. I explained the feeding dilemma and conveyed the impressions of the staff that Rose indicates that she wishes to die.
“She is not depressed and she doesn’t want to die!” Ron said. “What you are telling me is that they are going to starve Rose to death – giving her Morphine instead of food!” He was clearly upset.
Ron’s instructions were clear: “I do not want you to implement palliative care on my mother. I do not want them to starve her to death. I don’t care what it takes, but I want you to solve the problem and feed my mother.”
Despite working in Aged Care for 25yrs I have never come across the same passionate convictions of Ron before. He was a split image of his father Louis I thought. I respected their systematic and sound evaluation of difficult situations and their dedication to achieve the best outcome. And despite explaining in detail Best Practice Principles in this situation to Ron, I actually agreed with his assessment of Rose.
I collected thickened liquid food from the kitchen and went to Rose’s room.
“Would you like something to eat Rose?” I asked and held the food up. She smiled and nodded her head. I propped her up and offered the food to her eager mouth. But the moment the spoon passed her lips she clenched her teeth. She blew with force and sprayed the food over everything in the room - the bed, the floor and me. We tried several times with the same result.
I held back and observed Rose carefully. She was clearly distraught, anxious and upset by a situation she could NOT control. She turned her head away, closed her eyes and pretended to be asleep. I made her comfortable, cleaned the mess and reassured her that I would be back with a better plan. Only so briefly her eyes opened in a slither and she peeped at me. Just a hint of her old naughty smile crept back into the corner of her mouth.
Driving home in the dark I thought about the peculiar situation. “I am sure Rose is thirsty and hungry and eager to eat” I discussed with myself. “But she is scared because she cannot swallow properly. She is scared that the food will end up in her airways again. I’m sure we underestimate the impact of aspiration – the agony of pain, the fear of suffocation and then the inability to talk about it... How lonely and frightening would that make the struggle?”
“Perhaps we are looking at an adopted reflex protecting her airways. Perhaps feeding her with a spoon or a cup is like poking a finger into your eye. The jaw muscles (like the eye muscles) involuntary go into spasm to protect the airways”.
I pulled into the carport at my farmhouse, switched the car off and sat in the quiet darkness. “What if the primitive oral reflexes of Rose would still be present?” I thought and perked up. “If perhaps the search and suck reflexes are still present I might be able to overcome the trismus (spasm of the jaw muscles) and feed her. And if she would suck before she swallows, perhaps she would swallow more safely?”
I could feel my heart pounding in my chest. It felt like a far-fetched idea with not much chance of success. But maybe, just maybe it would work and Rose could eat again! How wonderful would that be?
“Would you like something to eat Rose?” I asked and held the food up. This time it was all there: a bowl of thickened liquid food, a teaspoon, a pot of honey and my trump card – a new calf teat that I sterilised and a 5mm hole cut in the tip.
Rose smiled encouragingly. I painted the teat with honey and explained the process in a calm voice as we proceeded. I placed the teat in the corner of her mouth and stroked it against the edge. And then the miracle happened: Rose’s lips started searching for the teat, her clenched teeth parted and I placed the spout central on her tongue. She hesitated for a moment and I moved the spout slightly forward and backward. The next moment Rose latched on and started sucking eagerly on the honey-flavored spout. I scooped thickened liquid with the teaspoon and fed it into the open back-end of the spout. When the cool liquid reached her mouth and throat Rose closed her eyes and indulged in perhaps the most appreciated meal she had in her life. She finished the whole bowl of food without a croak or a cough, lay back against the pillow with a sweet smile and soon was away in dreamland.
In the days that followed the carers fed Rose with the calf teat several times a day. She became well hydrated, energetic, started talking a few words and even started singing her old songs again. A Week later the breathing rattles in her chest were gone, and even with my stethoscope, I could hardly hear any more secretions in her lungs.
But then things turned for the worse. One of the carers complained to the DON (Director of Nursing) that it was inhumane and humiliating to feed an old lady with a calf teat. A couple of carers joined her plea and I was called in. I explained to the DON that the unit was full of nappy’s, dolls, toys and baby sippy cups. I quoted Shakespeare: Last scene of all that ends this strange eventful history, is second childishness... - “a reality that we all embrace” I proclaimed. She was unperturbed. “Where is the published evidence that this works?” she asked.
“You and I are the evidence,” I said. “If it did not work we would not be here. This is how all learned to feed effectively and safely”.
“It is not accepted Best Practice in Aged Care and we are not prepared to go against the industry standard,” she slammed back.
“But the family is ecstatic about Rose’s recovery and insist that she is fed in this way,” I protested.
“The family does not write health policy. I am responsible for what happens in this facility. I will not allow my residents and staff to be humiliated in this way and I am not prepared to part from the rules of accepted Best Practice in Aged Care in this facility,” she said and ended the conversation.
The next day I received a phone call from the Director of Palliative Care for the region. “I understand that you are ignoring palliative care instructions as issued by the state’s hospital system and are feeding an end stage dementia patient with a calf teat. Would that be correct?” she asked in a stern voice.
I had to agree and nothing I said in defense could please her. Without enquiring about my qualifications, expertise or special interests as a Rural GP, she continued for nearly 30 minutes with a lecture on Palliative Care and Best Practice in Aged Care. Shortly after the phone call I was called in by the CEO of the facility who informed me that my instructions on feeding Rose would be ignored in favour of the palliative care instructions issued by the state’s Health Authorities.
I phoned Ron and informed him of the final outcome. “How long before my mother will die?” he asked.
“I would expect 5 to 10 days” I replied.
Ron arrived by plane the next day and asked me to be present during his meeting with the DON and CEO of the facility. He asked for explanations and carefully listened to all the arguments. He quietly opened his briefcase and started reading from the “Charter of Residents Rights and Responsibilities in approved Nursing Homes”. He pointed out that feeding was a fundamental right of his mother. The CEO said that implied normal utensils used for that purpose, not a calf teat.
“So, what is your plan now?” Ron asked the CEO.
“We have already started implementing palliative care measures,” he said.
“That means you have already started to starve my mother and will continue to do so until she is dead?” Ron was clearly loosing his temper.
The CEO replied: “If that is how you want to describe it you can, but we will implement the protocols of approved Palliative Care measures and will stick to Best Practice in Aged Care in this facility.”
Ron was furious. “If you think for one moment that I will sit here and watch while you starve my mother to death, you have picked the wrong person. Even dying from a bullet is more humane than starving to death!”
The CEO jumped up red in the face with fury: “I will not allow you to speak like that in this facility. If you don’t back off now I will call the police!”
At his point I stepped in and suggested we move to plan B. I suggested that Ron stays and feed his mother in the way he prefers to feed her, and relieve the facility from their responsibility.
All parties accepted this compromise and Ron stayed for nearly 3 months personally feeding his mother 3 times per day with the calf teat. She was finally transferred to another facility that had no problem to take over the roll from Ron.
Rose lived for another 3 years before she died.
Ron was determined to sue the Aged Care Facility for forsaking their duty of care.
“Ron, to move outside the guidelines in our controlled modern society is risky for all parties” I said. “If there was a commercial product on the market that did the same as the calf teat, things would have been very different. If I give you my word to commercially develop the concept, would you hold off on the lawsuit?”
Ron agreed to suspend his legal actions and the RoseCup was born…
Sadly, some professionals and care givers are quick to pronounce a negative prognosis for those at Rose's stage of life and could even impose harsh measures to hasten death as her case demonstrates.
A “poor quality of life” verdict from our personal healthy and productive point of view should never be transferred to those at the frail end of life. The “virtual world” of those in the later stages of dementia is simply too complex for a comparative and simplistic approach. Despite being in the end stages of dementia both Ron and I experienced Rose as “happy in her world” – only requiring acceptance care and love. And if Rose would not be happy, it would be our duty to try and change things for the better.
Palliative Care protocols and Sedatives (i.e. Morphine) should NEVER take the place of Compassionate Care. The custodians of Best Practice in Palliative Care should be seen to endorse this simple humane principle and ensure to underwrite the implementation thereof at all levels of service provision.
In my view the Palliative Care process should NEVER include denial of oral hydration and food. The simple acknowledgement and accommodation of the most basic needs of our patients should remain as the highest priority for those who Care during our final hours. Ron and Rose firmly brought this message home. Experiencing firsthand Rose's sheer joy at being able to take a liquid meal, swallow it successfully and fall into a deep satisfying sleep, is to my mind proof enough that palliative care measures should include all possible efforts to offer food and hydration until the natural conclusion of life. I hope that the Lifemere product range brought about by the predicament of Rose, will assist in reaching this very target.
Accepting the unique beauty and frailty of the personal world of those in the departure hall of life (irrespective of cognitive achievement) is in my mind an essential premise in Palliative Care.
And finally, embracing the simple ethical principles in the final stages of life as demonstrated by Ron and Rose, might just help us to formulate an answer for those tempted by euthanasia and those advocating it.