Food, cancer and end of life: the role of the Macmillan palliative care dietitian

What does a palliative care dietitian do? Natalie Potter explains how her role helps cancer patients  and their families.

When I started my post as a Macmillan dietitian within the specialist palliative care team I’m not sure I really knew what to expect or what the essence of palliative care was, what I did know was that it was going to be a ‘special’ job.

So what does a palliative care dietitian really do?

• People are primarily referred to me for loss of appetite and weight loss.  Due to the effects of cancer on the body particularly in its end stages it is often impossible to reverse this weight loss.  Loss of appetite commonly accompanies this.

•  As a dietitian I can’t alter this physical process but there are many things I can do to support a patient and their carers in this difficult, often emotional area.

• I work to improve other symptoms with my nursing and medical colleagues which may affect intake. For example, feeling sick or other digestive problems. Oral health is very important; if someone has a sore or dry mouth, food can taste awful and eating may be painful.  Many patients lose the ability to taste anything, food is often described ‘as tastes like cardboard’ which makes eating unappealing and difficult. I can recommend specific vitamins as this can be due to a deficiency as well as providing advice on suitable foods.

• I provide specialist advice as part of a team on more complex gastrointestinal symptoms as I have years of clinical experience in these areas from previous job roles.

• I advise on improving the composition of whatever nutrition patients are able to take, for example by giving simple advice of fortifying foods or eating more suitable options. Many people are fearful of high fat, high calorie foods  due to the healthy eating messages all around us but in this case would be highly appropriate.

• I also recommend prescribable nutritional supplements in order to supply nutrition in a form that can be tolerated at that time and enhance overall nutritional intake.

• Above all I feel my most important discovery is the significant psychological impact loss of appetite and weight loss have on a patient and their loved ones. This part of their disease is a visible reminder of the illness itself and causes a whole spectrum of emotions. These may include grief and loss that someone may never fit into a favourite outfit or wear their wedding ring again, fear that the illness is progressing, distress, frustration and anger that the person just cannot eat and enjoy food as they once did.

• Food is love and involved in the process of caring.  At a time of intense medical interventions it is all families feel they can do for their loved ones. Relatives can often feel a huge sense of loss if this role is removed.

•  Many people don’t realise that weight loss and loss of appetite are a symptom of the cancer itself and out of the person’s control – something we as professionals take for granted. Sometimes just explaining this, although it is a difficult concept, can cause tremendous relief to both patients and carers. It can relieve conflict at meal times so that people may spend their precious time together at peace not arguing about how much to eat and drink.

Being a palliative care dietitian is indeed a special job; it draws on all my personal, clinical
and psychological skills and drives me to try to improve what I can for a patient and their family at a difficult time.

I consider myself very lucky, due to the ongoing support I receive from Macmillan and the opportunities I have had, in particular working with a wonderful highly specialised team and the privilege of working in the community we serve.