Palliative care nursing: the privilege of sharing a difficult journey

6 March 2017

Northland nursing tutor and palliative care nurse Michael McGivern reflects on providing palliative care – the skills, the rewards and the challenges – and encourages others to enter the field.

When I tell people I'm a palliative care nurse the response is often that that this must be "depressing" or "easy to get downhearted over".

But I tell them this need not be the case,particularly if nurses practice good self-care and have the support of an effective clinical team. When faced with caring for a dying person, nurses are entering one of the most sensitive and emotional stages in the life of that individual and are in an excellent position to make a difference to that person’s life, however small. When people are faced with living with a terminal illness, they are desperate for healthcare professionals who can walk with them on their journeys and be there for them when they need support and guidance 

I recall several years ago caring for a young woman in a hospice in England. She had only hours left to live and was extremely frightened of and anxious about dying. She would not lie down in her bed as she feared that she would not wake up again. This lady needed someone to be there with her in the absence of any family members to let her know that she would not be alone and could be at peace. Having someone constantly at the bedside holding her hand and providing continuous spiritual support and reassurance allowed this young woman to die peacefully a few hours later.

Palliative care nursing is unique as it enables nurses to use their skills and knowledge holistically, addressing all aspects of patients’ lives. When faced with patients who are experiencing adverse symptoms, nurses are challenged to identify the causes of their distress and work alongside medical colleagues to develop effective care plans. 

Although the ability to truly care for people is an essential attribute for a good nurse, it is also vital that we as nurses have an comprehensive knowledge base when making clinical decisions, particularly around reducing the intensity of patients’ symptoms and helping them to live their daily lives free of emotional and physical distress.

It’s the little things

While working alongside patients and their families, it is often the small things that can make a difference, such as organising a disabled parking permit for a carer so that they can park on the seafront and take the person for a short walk, or arranging some respite care so that the carer/s can get some much-needed sleep. 

The most important role when visiting patients is simply to listen and highlight the concerns they identify and not simply those problems that we see as being important. People appreciate healthcare professionals using active listening skills to fully get to grips with what is troubling patients at various times.

Palliative care clinical scenarios can be extremely challenging and test us as nurses to the limit. It is important for us to accept that we cannot be expected to know everything or always get things right first time. Patients and their families appreciate clinicians who focus on enhancing patients’ levels of comfort and who will trial strategies that may ultimately reduce their suffering. Palliative care nursing is a wonderful opportunity for us as nurses to use our own life skills, experiences and personalities to enter the world of those who are dying and simply provide the care and support for which they yearn so much.

Physician-assisted dying debate

As nurses, it is very difficult to watch patients suffer, particularly those receiving palliative care, and people will have different beliefs around patients wishing to end their lives prematurely to avoid it. Debate in New Zealand around euthanasia and a person’s right to request physician-assisted suicide is ongoing. None of us would ever want to be in a position where we or our family members are experiencing intolerable distress and suffering. It is obvious why some patients would welcome any change in legislation, particularly those who have not received excellent symptom management from experienced palliative care professionals.

It would be very unrealistic to suggest that people receiving hospice care will never experience any adverse symptoms, particularly pain, but from my clinical experience, doctors and nurses in this field work tirelessly to ensure that symptoms are reduced to an absolute minimum and will review a changing clinical picture sometimes several times a day if required.

If the euthanasia legislation were to change in terms of allowing physician-assisted suicide, I would very much hope that patients and their families would continue to place their faith in palliative care services in order to maintain their levels of comfort and avoid living in constant fear of having to experience ongoing suffering.

Personal fulfilment

For those nurses considering a future in palliative care, particularly those in training, I strongly encourage you to explore this field in more depth. The personal fulfilment and satisfaction in this work can be huge. Caring for the dying is a unique and special privilege and allows nurses to practise those traditional values associated with our profession. When we are faced with terminally ill people who are frightened and distressed, we should not be afraid to sit and hold their hands and just be there for them and their families.

In summary, we should reflect on the words of Dr Cicely Saunders (1918-2005) who was considered to be the founder of the modern hospice movement.

“You matter because you are you, and you matter to the end of your life. We will do all we can to help you not only die peacefully, but also to live until you die.”

Opinion Author: Michael J McGivern RGN RMN MN

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