Palace of Care – Where There’s a Will

Photo by Miguel Bruna on Unsplash

Willpower can be like a superpower for some people. Through sheer force of will they can make themselves stand up from their deathbed and walk to the toilet. I’ve witnessed people hold on until the arrival of overseas relatives. People who I can’t explain through physiology how they could still be possibly alive two weeks after they had any oral intake of food or fluid. What hidden reserves do they draw upon to sustain themselves? I don’t know, I can’t explain it with science. There is still much we do not know.

Let the force be with you. Well, it certainly is with some of my patients. The sheer force of determination. Or is it love? Or faith? People can hold on to life despite the worst of circumstances. Viktor E. Frankl and others could survive concentration camps because they had something to continue living for. What if you do not want to live any longer? What if life is full of pain and has become unbearable? What if you spent your whole life in control but have lost control at the end of your life?

I’ve seen many former professional people who had spent their careers in charge of people, struggle when they have lost control. They included school principals, charge nurses, managing directors, coaches and military leaders. They had guided their staff through difficult situations but had trouble guiding themselves through their final situation. The existential distress of dying caused them much suffering. Some of them would’ve requested an assisted death if it had been available to them. Some people will try their hardest to die and may wake up disappointed each morning they survive.

I’ve watched feeling powerless as people put as much effort as possible into dying naturally. They willed themselves to stop living and expended many hours in distress when it didn’t work. As in the rest of their lives when they wanted to achieve something they had pushed as hard as they could. Striving with the full force of their will to grab onto something that would take them away. Losing their last shreds of patience and sometimes shaking their faith, they kept trying harder and harder, beyond exhaustion.

Until.
They.
Finally.
Let.
Go.

Other people, like my patient from Europe, could let themselves go. They may have said their goodbyes to the people they needed to. They might have had one last family reunion or spent one last night with their loved ones. They did what they needed to, finished their business, and then relaxed and let themselves drift away. To sleep perchance to dream.

Palace of Care – And Then There Was One

Photo by Clay Banks on Unsplash

Sometimes when situations feel stuck a nudge may be required. A change in mindset or plans may be necessary to escape limbo. Patients who may have been in relative stability might be prepared for discharge. Things cannot continue as they are. Normality can only be paused for so long. Children continue to grow up. School holidays start and finish. Jobs have to be worked. Life has to go on.

We had expected her to deteriorate within days. No one could have predicted she would be alive for weeks let alone enjoying some form of quality of life. She had outlived all prognostication attempts by many weeks and almost months. How? Fantastic support from family and friends. Good palliative care was directed by her wishes. We had promised to listen, to allow her to be the driver. We had kept the promise. To continue her steroid medication while she still enjoyed quality of life, as defined by her. We would wean the medication off if it wasn’t working any more if intolerable suffering occurred, if she was dying.

She made the most of each day. Eating food, drinking her husband’s coffee, and having visits from friends. Visits home for family meals and her favourite drinks including world-famous beers and gins. The four-legged family members had missed their mother so much. She enjoyed time in our garden and often caught some rays in the courtyard. Solid plans were being made for longer, overnight leaves at home. Her husband had been trained to deal with problems that might crop up at home. Everything was being prepared for more time at home.

We had stopped being surprised by her long lack of deterioration. When the final deterioration occurred it came as a shock. A slight cough turned into a likely chest infection. Her swallowing ability had fluctuated markedly over the past weeks. A mis-swallow had allowed food or drink to be breathed into her lungs. This aspiration led to pneumonia. We offered antibiotics and hospital admission. They knew she didn’t want to go back to a hospital, a place of great stress for all of them. No antibiotics, thank you.

When it was clear she was dying they wanted to take her home. They were willing to accept the risk of dying en route as they knew she wanted to die at home. Mission accomplished. She spent her final hours with her family, furry ones included. Mixed in with the many tears of sadness were some scant droplets of relief. She was here until she wasn’t.

Rest in peace dear lady.

Early palliative care – when should quality care start?

We have been talking about quality care at Palliverse this month a topic that has a lot of relevance to early palliative care.  The WHO talks about early palliative care as meaning care that is offered at the time of a life-limiting diagnosis.  In practice palliative care is often offered much later, and some have suggested that this means that real benefits are missed for many people.
hospital-736568_1920

Continue reading

Elsewhere in the Palliverse – Weekend Reads

photo by David Mao itsdavoHere’s the latest collection of reads for your weekend, with palliative care news from around the world, research and social media advice, and a palliative pet care story. As always, please enjoy and share your thoughts in the comments below.

Today is World Refugee Day, at a time when world refugee numbers are at their highest since WWII. A new Palliative Care in Complex Humanitarian Emergencies (PALCHE) network has launched to help address the unmet palliative care needs of the world’s >60 million refugees. Read about it (and find out how to get involved) at ehospice.

Happy 10th Birthday, Pallimed! Continue reading