I feel helpless when patients are not relieved from their pain - palliative care nurse

Nurses in Malta have been recently advocating for better working conditions, as many have been left feeling burnt out, particularly at the height of the pandemic.

Some hospital vacancies are harder to fill than others, as the type of job could not be endured by many. One of these is in the palliative care section at the oncology centre, which caters for the needs of cancer patients who are in their final stages.

The Malta Independent on Sunday sat down with a palliative care nurse, who wanted to anonymously share his firsthand experience in the field.

Like most student nurses he never imagined that at the end of his studies he would end up working as a palliative care nurse by choice.

“In the beginning of my career they would not let us settle in one ward, but they would make us do the rounds and help where needed; that is how I ended up as a reliever in the palliative care section,” he said.

He said that he liked it mainly because of the way in which treatment was being given, as patients in this section are treated “holistically”. This means that staff also pays close attention to how the patients are feeling emotionally, not just the pain and side effects left by cancer.

Although this is always the goal of every nurse, and not just those working in the palliative care section, he said that this might be easier to see in this section specifically, simply because each nurse has a smaller number of patients allocated than if they were to work in the main hospital.

Since palliative care nurses spend more time with their patients, they are also more aware of their mental health status. When they witness a deterioration, they let doctors know so if needed they can also be referred to a psychologist.

“You end up developing a kind of friendship with them, obviously without crossing the professional line,” he said.

He said that such relationships would have a stronger sense of relatability, when the nurse’s assignment would know the patient from before their admission, as they would feel more for them. He added that despite this there are other factors which might affect this kind of relationship, such as the age as “in my case I think I would relate a little bit more with younger patients, even more if they are within my age group”.

Speaking about how his emotions are affected by this profession, he said that in the beginning, when he used to attend to these patients’ needs, he used to feel these emotions deeper, although he never continued to dwell on them when his shift ended.

He added that apart from the patients’ emotions, it is also the relatives’ reactions to seeing a loved one deteriorate that affects palliative care nurses “as they are mostly in denial”.

More often than not, this denial stage brings with it its own challenges as certain delicate discussions might not have been broached by doctors.

“If we see they are nearing the end we have to talk to them,” he said.

He said that in such cases they would first ask patients, together with their family, what they have been told by doctors.

Asked how he has learned to deal with these situations, he said that mostly he has learnt through experience and observing other nurses who have been there for a longer time. He added that during his university years, students were not given much information on palliative care, as “we were only given maybe two to three lectures on the subject”.

He said that his perceptions on life have changed since he started working with palliative care nurses. People make a fuss about a broken finger when the pain of a dying cancer patient is so much on a higher level.

Speaking about the patients’ age range, he said he has seen an increase in patients being admitted in their 40s.

The nurse said that although he finds no problem working with adult patients, he would feel very uncomfortable to work with palliative care patients who are under the age of 18.

“I don’t feel comfortable working with kids and having to witness them endure such hardships; with adult patients it’s different as it does not affect me that much,” he said.

He added that apart from having to witness such suffering in children, it is also hard for nurses to see their family cry from being so heartbroken, “especially their parents”.

Asked how he deals with such emotions, he said that although such instances are rare, he just talks it out with his partner who also happens to be a nurse.

Speaking about other palliative care nurses, he said that he “knows others who have been affected a lot by particular cases, which makes them sad”.

He said he always tries to keep himself and others in a good mood during working hours, by simply cracking an innocent joke to lighten the mood and the atmosphere; a technique which he suggested might be a coping mechanism, “although I am not sure about it”.

Despite all the drawbacks which might push other nurses not to work in this particular section, the nurse said that he has until now not experienced any burnout symptoms. Unlike him, there were others who, in the short time he has been working in the palliative care section, have resigned as there were too many circumstantial elements which stressed them out.

Depressive emotions are also felt by patients who are first admitted to the palliative care section as they would be in a poor condition.

He said that the first thing that nurses do to try and make them feel better and more comfortable is to treat the cancer side effects.

“We try to welcome them with a certain kind of love and care, so they feel more comfortable and at ease, especially considering that this is the final stage of their life.”

He said they were not taught how to deal with such situations during the nursing course, but he added that they were taught to always show compassion towards any patient. He added that this kind of behaviour needs to be more present in the palliative section as patients, and their family, tend to be in a much more vulnerable state.

Apart from nurses, patients’ relatives can also have an active role in the caring of patients, if they are stable enough to go home. Mentioning the services offered by Hospice Malta, he said that when such time comes, relatives are given a referral for them to be given the necessary equipment for the patient to live comfortably at home. At such a stage training would also be given to the patient’s family so that they operate it themselves.

“We try to equip the family to cater for these needs directly at home as much as possible as we want them to stay comfortable, as long as the wishes of the family coincide with that of the patient, that is, for him or her to remain and pass away at home comfortably.“

He said it is not the first time that patients have no one who comes to visit, even though they have families who supposedly care for them.

He said that such situations make him feel uncomfortable as he asks himself why nobody cares enough to come visit such patients in their final stage in life.

He added that when this happens some patients are visibly sad and that makes him pity them even more. Despite this, nurses are still obliged to update relatives on the condition of the sick family member.

Mentioning a case, in which the patient was not being visited by anyone because he had some family issues, he explained how he, together “with other nurses, stayed near him as he passed away”.

Asked how he feels when a patient passes away, he said that it has never affected him that much as he has always seen it as being a part of the job.

“I think since it is given that we see a lot of these things happening in front of our eyes, we have

developed some kind of barrier so as such things do not affect us that much,” he said.

He said that one of the things which leave an impact on him is when treatment given to patients does not help to ease the suffering. This makes him feel helpless.

Although there are patients with other conditions, who might benefit from a section dedicated to palliative care, such as heart failure, only cancer patients have a special palliative care section. Currently these patients are treated in hospital.

Despite these shortcomings, he pointed out that such a section would be difficult to maintain as currently there is a shortage of nurses. Secondly, it could also be the case that it is not used so often as, unlike cancer, where the patient is admitted into palliative care following many failed treatment attempts, the decision is not easy to take for other patients.

He said that it is already very difficult for palliative care nurses having to explain to cancer patients that they cannot continue to force treatment such as IV fluids as in some cases it would be making such patients feel worse, especially as they near the end, thus he cannot imagine having to explain to families of patients suffering from other conditions, where the line is not so much clear.

Speaking about the kind of stress that nurses have to endure, he said that during the height of the Covid-19 pandemic when the section was given specific instructions not to let in any visitors, “it was very hard on us as they wrote several articles about us saying that we are not compassionate, when we were just doing our jobs”. He added that during the time they were trying to do their best as they were even handing tablets to patients to video chat with their family.

He added that it was thanks to a psychological meeting between nurses, organised by the concerned entities, that they managed to vent it all out.