I’ve been working as a junior doctor for only two years. During this time I’ve seen end of life care as experienced by patients in various medical and surgical specialties. As a junior member of the team, I face slightly different challenges to my seniors, including ensuring that my voice is heard.
Food and drink as a neglected topic
In my experience, one of the most overlooked aspects of end of life care in hospital is nutrition and hydration. I’ve seen cases where the careful planning of future treatment and symptom control didn’t include discussions about managing any future needs for assistance with eating and drinking. From what I’ve seen, patients were more likely to have these issues raised if they’d had difficulties, for example swallowing problems leading to aspiration (where they inhale food).
In everyday life, food and drink are a huge part of most social occasions. They make up an enormous part of cultures, and for most people, life events are celebrated alongside meals. It is a shame, then, that for many patients approaching the end of their lives, eating and drinking is not discussed with the same level of importance as other aspects of their care.
An example of decision-making
Recently I was caring for a patient with throat cancer, who had a tracheostomy tube in place to help him to breathe. It was uncertain whether any more treatment for his cancer would help. Unfortunately swallowing became very difficult for him, meaning that he would often develop pneumonia because of aspirating. While he was unwell, chemotherapy wasn’t an option, but he felt that eating and drinking was important enough to his quality of life that he would prefer to continue to enjoy the small amounts he could manage even bearing in mind the risks.
To me, this patient’s case underlined just how important it is to have clear discussions with patients and their families about food and drink towards the end of life. Whilst his decision was not one that every patient would make, in making him aware of his options he was able to decide what was right for him, and continue to receive enjoyment from food and drink during his final weeks.
Challenges and introducing clinical assistance
Talking about food and drink is difficult. One factor is the complexity of decisions. For example, patients may find it difficult to understand what may happen to their body in the last weeks or months of life, and how taking food or drink normally can sometimes cause harm.
More complex still is clinically assisted nutrition and hydration (CANH). This includes any means other than normal eating and drinking to provide food and drink, such as feeding tubes through the nose or stomach wall, or fluid given through the veins or under the skin. In many cases, it’s very difficult to know whether providing these measures will improve, or even prolong the patient’s life. Clinical evidence for the benefits of CANH in the late stages of dying is inconclusive. And in some cases these interventions may also produce side-effects. While families and doctors often feel that providing CANH to patients is appropriate, in many cases this may not be true and the risks might outweigh the benefits.
With these difficulties, there are some things that help to make decisions about food and drink easier. To me, the most important of these is to have conversations as early as possible, when it becomes apparent that a patient may have complex needs around nutrition as their condition progresses. All patients nearing the end of life and their families can be made aware that they may not need to eat or drink as much towards their last days.
Knowing that these are challenging conversations, I find it useful to make dedicated time just to discuss nutrition and hydration, sometimes revisiting it again at a later time. It’s often difficult as a doctor to talk about uncertainty. But I’ve found that patients and their families really appreciate the honesty of explaining that you may not know exactly what will happen, for example when you introduce CANH, especially if you explain that decisions can change should things become clearer.
Lastly, I’ve nearly always been the most junior member of the medical team. This gives me the advantage of plenty of patient contact, but it can make it difficult to make my voice heard at times. It’s always helped me to be able to raise questions framed as learning points for myself, which often open up conversations that might not happen otherwise. As the person most often on the ward, this creates a really good opportunity to explore how patients and their families feel about food and drink, and to discuss any decisions, which makes a huge difference to how they experience their care.
Keeping food and drink in mind
Food and drink is an important and sometimes emotive aspect of care, and decisions are complicated. It is a great shame, then, that patients aren’t always given the chance to discuss how their needs for nutrition and hydration might change over time, and make clear decisions about such an important aspect of their life.
The first step, though, is just to realise this and to approach it with patients just as we would any other aspect of end of life care.
Dr Rebecca Gemmell is an F2 doctor
Care Quality Commission report on Dignity and nutrition in hospitals
Dr Katie Smith on End of Life Care requiring care, compassion and simple humanity
Dr Kirsty Boyd on hoping, coping and planning ahead