The following excerpt is from the ANMF’s Palliative Care tutorial on the Continuing Professional Education (CPE) website.
The World Health Organization (WHO) defines palliative care as: “An approach that improves the quality of life of patients and their families facing the problem 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.”
- provides relief from pain and other distressing symptoms such as vomiting and shortness of breath;
- affirms life and regards dying as a normal process;
- intends neither to hasten or postpone death;
- integrates the psychological and spiritual aspects of patient care;
- offers a support system to help patients live as actively as possible until death;
- offers a support system to help the family cope during the patient’s illness and in their own bereavement;
- uses a team approach to address the needs of patients and their families, including bereavement counselling, if indicated;
- will enhance quality of life, and may also positively influence the course of illness; and
- is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications.” (WHO 2020).
Palliative care for children represents a special, albeit closely related field to adult palliative care. WHO’s definition of palliative care appropriate for children and their families is as follows:
- Palliative care for children is the active total care of the child’s body, mind and spirit, and also involves giving support to the family;
- It begins when illness is diagnosed and continues regardless of whether or not a child receives treatment directed at the disease;
- Health providers must evaluate and alleviate a child’s physical, psychological, and social distress;
- Effective palliative care requires a broad multidisciplinary approach that includes the family and makes use of available community resources; it can be successfully implemented even if resources are limited; and
- It can be provided in tertiary care facilities, in community health centres and even in children’s homes.” (WHO 2020).
This definition and description of palliative care indicates that, contrary to earlier definitions, individuals with diseases other than cancer that have a terminal phase and are progressive in nature would benefit from the philosophy underpinning the palliative approach.
These include chronic obstructive pulmonary disease (COPD), Alzheimer’s disease, AIDS, heart failure and acute massive cerebrovascular accident, to name a few.
The individual receiving palliative care is an important partner in the planning of their care and managing their illness.
When people are well informed, participate in treatment decisions and communicate openly with their doctors, nurses and other health professionals, they help make their care as effective as possible.
Care planning is an important process in ensuring the individual’s wishes, in relation to their care, are met.
Palliative care is active care. It anticipates problems that might arise, and aims to minimise the impact of the progressing illness so that the person can live life to the fullest.
No one professional can deliver all of the elements of care. Palliative care requires the cooperation and participation of a range of healthcare providers.
WHAT IS A PALLIATIVE APPROACH?
The underlying philosophy of a palliative approach is a positive and open attitude towards death and dying.
The promotion of a more open approach to discussions of death and dying between the care team, the client and their families ensures identification of their wishes regarding end-of-life care.
It is vital to be aware of and understand the individual’s cultural and spiritual beliefs to address their needs in an appropriate and acceptable manner.
A palliative approach is not confined to the end stages of an illness.
A palliative approach provides a focus on active comfort care and a positive approach to easing an individual’s symptoms and distress.
In most western societies, discussion of death and dying creates discomfort.
This distancing response to death and dying is reflected in poor communication about the topic, limited resources directed to this specialty area, and minimal education about how to provide supportive end-of-life care.
Promoting a person’s sense of dignity is central to a palliative approach, and dignity and quality of life are vital links in this approach. Several researchers have explored what people’s views on quality of life means to them as their death approaches. Themes identified include having adequate pain and symptom management, avoiding inappropriate prolongation of dying, relieving burdens, achieving a sense of control, and strengthening relationships with loved ones.
People may hold different views about what dignity means, and in the face of progressive illness or the ageing process, the meaning of dignity may change over time. It is also important to note that the team’s perception of dignity may differ from that of the individual. The best way to understand what dignity means for the individual is to ask them and their family what are the most important factors for him or her concerning dying with dignity.
TALKING ABOUT PALLIATIVE CARE
Talking about dying is hard and it is sad. However, death is inevitable and the better prepared for our death, the easier it will be on the ones left behind.
It is also important to talk about death so everyone involved can prepare well.
If people do not have the opportunity to talk about dying and understand their rights when they die, we run the risk of the person, their families and carers, experiencing a difficult death. We need to talk about dying to become advocates for good palliative care and a comfortable death for all Australians (Palliative Care Australia 2020).
FAMILIES AND A PALLIATIVE APPROACH
A family member can be considered as any person who is part of the central core in the support network of an individual, including non-family carers.
For some family members, this may be their first experience of a palliative approach or their first experience of impending death. They need an opportunity to have privacy to attend to such matters as:
- Treatment decisions;
- Family member’s history; and
- Tensions that may surface at this time (eg. relationships, financial concerns).
The family will also require education on how a palliative approach works and an explanation of the signs of impending death to reduce their fears.
Research undertaken to evaluate the effectiveness of a palliative approach has suggested that a palliative approach may be at least of equal value and may often be of more value to the family than to the dying person.
The evidence suggests that families value not only technically competent physical care but also regard emotionally sensitive care as especially important.
Families appreciate good communication with those who provide care to their family member, affirmation from the care providers that the families input is valued and permission from care providers for families to withdraw at times from the caregiving situation.
Families describe the importance of time with the team, being kept informed about their loved one’s condition and being treated as if they have an active and equal role in the care planning process.
Specific palliative approach interventions found to be helpful to families include:
- access to 24 hour medical and nursing advice (not always possible in rural and remote areas);
- use of family conferences to obtain and share information;
- attention by the team to the loved one as a whole person; and
- competent pain management and comfort measures.
The family’s trust in the team is essential, helping them build a satisfactory partnership with them. By entering into a caregiving partnership with the team, some family members can express their love for the client through contributing to their care.
Therefore, if a person is admitted towards the end of their illness trajectory or ageing process, the team need to help the family build a satisfactory partnership as members of the team.
To build this trust and fulfil family’s needs, extra time and good communication skills are required from all members of the team.
Palliative Care Australia (PCA) 2020b: talking about palliative care. palliativecare.org.au/talking-about-palliative-care#
World Health Organization (WHO) 2020: Definition of palliative care. who.int/cancer/palliative/definition/en/
The following is an excerpt from the ANMF’s Palliative Care tutorial on the Continuing Professional Education (CPE) website.
This tutorial has recently been reviewed to reflect best and current practice. The complete tutorial also covers: Forms of palliative care, who should receive palliative care, detailed information on the Palliative Care Standards, available palliative care options, the palliative care team, diagnosis of a life-threatening illness, advance care planning, ethics including euthanasia and voluntary assisted dying, physical symptom assessment and management, cultural and spiritual needs, caring for dying patients, grief and bereavement and number of resources to assist you to provide quality palliative care.
To access the complete tutorial go to anmf.cliniciansmatrix.com which gives 90 minutes of CPD.
QNMU, NSWNMA and NT members have access to all learning on the CPE website free as part of their member benefits.
For further information, contact the education team at firstname.lastname@example.org