Palliative care – end of life care takes a special kind of nurse
Strong support is an essential part of life, especially when you’re facing a serious and life-limiting illness. For those living with advanced cancer, motor neurone, advanced lung, heart, kidney or liver disease, HIV/AID or dementia – palliative care offers the necessary support to manage symptoms and improve quality of life. End-of-life care is an important part of palliative care. It often involves bringing together a range of health professionals and assist patients to live as actively as possible and to preserve dignity and choice through the end of life. It is available for everyone regardless of age, culture, background and beliefs.
Despite advances in modern medicine, sometimes medical conditions cannot be fixed. Death and dying are inevitable parts of life and are a uniquely personal experience. No two end of life situations are the same. If a person has a life-limiting condition, which means that it cannot be cured and will lead to the end of their life, the focus of their care will shift from aiming to cure them, to ensuring they have the best quality of life.
Palliative care adopts a team based, interdisciplinary approach to providing end-of-life care to a person and their primary carers. A palliative care team may include a number of different health care professionals including doctors, nurses, physiotherapists, pharmacists and nutritionists. The involvement of these professionals will be based on the needs of the person receiving care. Specialist palliative care staff are trained with specific skills and in symptom management, emotional, spiritual, practical and cultural care.
End-of-life care has become the focus of most health care organisations due to the increasing number of patients who are living longer with chronic and terminal diseases. Today, patients are more involved in the discussion towards end-of-life care, and nurses are the ones who provide this care. A palliative care nurse looks after their patients’ physical and emotional needs, and also offer support for their family and loved ones. They
often work in teams with doctors, allied health professionals, family members and support workers such as assistants in nursing to provide multidisciplinary clinical care.
Palliative care nurses may be responsible for a number of roles including monitoring patients, pain management, administering medication, managing equipment, and providing patients with personal care, such as bathing and dressing. While clinical intervention is a large part of palliative care, the role of a palliative care nurse is to also advocate for patients and their families and support them through the fear, anxiety and grief associated with terminal illness. The World Health Organization (WHO) defines palliative care as ‘an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual’
Typically, because most terminal conditions require multi-faceted medical care, a range of specialists are usually involved in a patient’s palliative care plan. The term ’health care professional’ covers a wide range of professions, including doctors, nurses, physiotherapists, pharmacists and nutritionists. There are many people who provide palliative care services. A palliative care nurse, aside from needing a broad skill set to be able to work with other health care professionals, will often also take a major role in co-ordinating, and working with these care providers, particularly if a patient is at home, and not in a residential care facility.
Palliative care nurses tend to bond closely with the family – get to know them, and the circumstances, and what they are all going through. For many of these families, the familiarity of a friendly face at the inevitable tough times is what helps them to cope with the situations they find themselves in, as the illness progresses and the patient edges closer to death. Palliative care nurses need to strike a delicate balance between providing compassionate leadership in a time of crisis, and knowing when to ‘step back’ and give the patient and the family space. Palliative care nurses also need to draw a boundary between their professional care, and their emotional attachment to the patient and the family.
What does a Palliative Care Nurse do?
There tends to be three broad components to end-of-life patient care. The first is understanding the fact that at this point in life, patient care tends to be patient-led and it is the role of the palliative care nurse to ensure physical comfort (treating symptoms and pain), while enabling the patient some choices within the framework of appropriate care options.
The second is that patients also need to have their emotional and spiritual needs met too – these will often be strong at this point. Palliative nurses have an important role to play in helping people to face their mortality, and to help their loved ones to begin the process of grieving.
The third is helping patients to cover off the practicalities. At this point in life, many people are so caught up with emotion, they tend to forget or can sometimes overlook the ‘administration’ side of death. That is, the need to make a will and plan for the funeral. It may also include helping loved ones to think ahead and consider what they will do when their loved one is gone. A nurse doesn’t need to take on all of these responsibilities alone, but will often be a conduit for other services – a point of information and assistance for the patient and the family.
Why is Palliative Care important?
Depending on a patient’s circumstances, a person may access palliative care for several years, months, weeks or days. It’s estimated that around 65,000 Australians access palliative care every year, with many more receiving palliative care in aged care homes. 1 in every 1,000 GP visits in Australia is related to palliative care. More older Australians are choosing to stay at home in their later years and a significant number are also choosing to die at home. As such, the demand for in-home palliative care services for aging Australians is rising.
Whether you are young or old, sick or well—the one thing we all have in common is that dying will be part of our lives. For those with a serious, life-limiting condition, palliative care can make it a more positive experience. It can enable people to be comfortable at the end of their lives and ease their concerns and that of their families, allowing them to enjoy their time together.
Palliative care nurse has a big strong heart… it is not easy going to work every day knowing that the people you are caring for are going to die, especially considering most of us enter the nursing profession with the desire to heal. Palliative care can make a tremendous difference to someone and it is often a very positive experience for patients, their families and loved ones at a time that can be traumatic and stressful as they come to terms with the fragility of this beautiful gift called life and the inevitability of death.
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