Palliative care patients and enjoyment at the end of life
There is a common misconception that palliative care is for people for whom doctors have no hope – that it is for people who are dying. While palliative care is often provided to patients who are in the final stages of a terminal illness, this is not always the case, as a patient may receive palliative care during any stage of their illness to make them comfortable and improve their quality of life.
What is important to note is that all palliative care patients can benefit from moments of enjoyment while they are in the midst of receiving care. Even if patients are dying, they are also still living.
In one 2010 study looking at the meaning in the lives of palliative care patients, researchers found that patients at this stage of their lives place a higher value on their partner and friends, leisure, spirituality, well-being, nature and animals, and pleasure than participants from the general population. This was after administering the Schedule for Meaning in Life Evaluation (SMiLE) on 100 patients receiving palliative care, and the same number of healthy participants.
The inclusion of things like leisure and pleasure is significant here, as it shows us that patients who are in the final stages of their lives still have the ability – and the need – to experience things that they enjoy.
This explains why the chief of the palliative care unit at Clermont-Ferrand University Hospital in south-central France decided to start a wine bar for terminal patients at the hospital. Dr Virginie Guastella was moved to do so after a Christmas party at the hospital, when seeing one patient in her care – a 50-year-old man suffering from a neurodegenerative disease that left him unable to chew or swallow – was entirely left out of the festivities. Because he was only able to consume food through a feeding tube, the patient could no longer find pleasure in the food he once enjoyed. Dr Guastella decided to drop some diluted red wine on his tongue – not enough to swallow, but just the right amount to trigger the pleasure sensors in the dying Frenchman’s brain.
In the years that have followed, the hospital has established a wine bar that is stocked by donors from wine farms. Not so much a bar as a cellar, this area of the hospital stores a wide array of wine that is routinely served to patients, should they want some. The hospital has also started incorporating food tastings into their offering, including caviar and French pastries. Dr Guastella believes that wine and good food every now and then helps patients maintain a sense of dignity and normalcy. It is a powerful panacea to the anhedonia (an inability to feel pleasure) that palliative care patients often experience in a sterile hospital environment.
This story tells us a lot about how we can improve the lives of friends or family members who are in palliative care. If you are unsure as to how you can make an ill loved one’s remaining days better, ask them what they’d enjoy doing, and try to reconcile this with what they are able to do. While a terminally ill patient may not be able to go to the beach, they might enjoy looking through old photos of beach holidays, for example.
As is the case with the wine bar, the good effects from sharing a glass of wine with a sick patient is in the sharing – something that can be invaluable to a patient at the end of life.