Palliative Care

Within the context of medical care, the verb ‘palliate’ means to relieve pain without dealing with the cause of it; that is, to provide pain relief but not to ‘cure’ the condition. The peak body for palliative care, Palliative Care Australia, defines palliative care as:

Palliative care uses a holistic approach to address all aspects of the person’s being. It can include supporting the person’s family and other significant people and relationships.

Aim and Benefits of Palliative Care

Palliative care aims to support people with incurable conditions that may lead to death in the foreseeable future and to maintain the best quality of life for them. People receiving palliative care may be younger people with illnesses that curtail or limit their lives as well as older people nearing the end of their life span. Palliative care uses a holistic approach that includes support for the person’s physical, emotional, psychological, social, cultural and spiritual needs. It also provides support to the person’s family and significant others.

Benefits of Palliative Care:

1. Improved Quality of Life: Palliative care focuses on alleviating pain and distressing symptoms, leading to a higher quality of life for patients.
2. Enhanced Symptom Management: Palliative care expertise helps manage symptoms that may be challenging to control in other healthcare settings.
3. Emotional and Psychosocial Support: Patients and families receive counselling and emotional support to cope with the challenges of serious illness.
4. Patient-Focused Care: Palliative care respects individual preferences and values, allowing patients to have a say in their care.
5. Coordination of Care: Palliative care teams ensure that care is coordinated across various healthcare providers and settings.
6. Better Decision-Making: Patients and families are supported in making well-informed decisions about treatment options, including end-of-life choices.
7. Reduced Hospitalisations: Effective symptom management and support can lead to fewer hospitalisations and emergency room visits.

The benefits to the person, family members and others of palliative care include making the end of life easier for everyone, ensuring the person’s quality of life for as long as possible, and relieving family members and others of the burden of care. One benefit of using a palliative approach is avoiding unnecessary pain and suffering that may result from ‘heroic’ medical interventions to preserve and prolong life at all costs, especially when this is not what the person wants. This illustrates the strong focus of the palliative approach on respecting the person’s wishes and preferences.

Scope and Limits of Palliative Care

Palliative care is applicable to a wide range of serious illnesses, including but not limited to cancer, heart failure, chronic obstructive pulmonary disease (COPD), dementia, amyotrophic lateral sclerosis (ALS), and HIV/AIDS. It can be provided in various settings, such as hospitals, hospices, nursing homes, and even at home. The scope includes:

1. Physical Care: Pain management, symptom control, and addressing side effects of treatments.
2. Psychological Care: Emotional support, counselling, and assistance in coping with anxiety, depression, and existential concerns.
3. Social Support: Addressing social isolation, providing resources for financial and legal concerns, and assisting with care coordination.
4. Spiritual Care: Supporting patients' spiritual needs and helping them find meaning and purpose in their journey.
5. End-of-Life Care: Ensuring a comfortable and dignified dying process, respecting patients' wishes for their final days.
6. Bereavement Support: Assisting families with the grieving process after the patient's passing.

Palliative care services can include a range of services and supports, including:

• pain relief and treatment of symptoms
• emotional and psychological support to the person and family members
• assistance with cultural requirements and obligations
• spiritual support
• practical support (equipment and other resources) to make home care possible
• bereavement counselling and grief management support
• providing information about, and referrals to, other services such as respite care.

There are some limitations to what palliative care can achieve. It cannot prevent death, and it cannot cure the illness or reverse the condition. It also stops short of helping the person to die. Within these limits, palliative care can make a significant contribution to the person’s quality of life and to the experience of dying for the person and for their family and carers, with the ultimate aim of the person achieving ‘a good death’ on their own terms. This can mean ensuring that the person is as free from pain and suffering as possible, that they can choose the place and environment, and that their family, carers and significant others are supported throughout the process. Ultimately, they are given as much control over the experience as is legally possible. Your role in contributing to palliative care will depend on the scope of your job role description. If a client has any needs outside the scope of your job role, refer these to your supervisor, who may in turn need to refer them to another specialist or service provider.

Philosophy of Palliative Care

Palliative care is a specialised approach to healthcare that focuses on providing relief from the symptoms and suffering experienced by individuals facing serious illnesses, particularly those with life-limiting conditions. The philosophy of palliative care revolves around enhancing the quality of life for patients and their families by addressing physical, emotional, social, and spiritual needs. It recognises that medical treatment alone might not be sufficient, and that comprehensive care should encompass the person as a whole.

When we are involved in providing palliative care and support, there are two key concepts we need to understand: our clients’ support needs, and the concept of holistic care.

Support Needs

We tend to focus on the person’s physical needs when we think about palliative care: pain relief, nursing care and keeping the person physically comfortable. There are other needs that are just as important for people with life threatening illnesses. These include the need for emotional and psychological support; social needs and relationships; and cultural and spiritual needs.

Holistic, Person-Centred Approach

A holistic approach is one that addresses the needs of the ‘whole person’. This is important in palliative care because facing a life threatening or life limiting condition involves all aspects of a person’s being. Person-centred care places the person at the centre and in control of planning and evaluating services and supports. This is important for providing the person with autonomy and control over what is happening to them.

Principles

Palliative care aims to make end-of-life experience as positive as possible for the person and for those close to them. It requires strength, compassion and an acceptance of dying as part of the cycle of life. It also requires adherence to clear principles that value human life and that respect individual choices and perspectives.

Principles of Palliative Care include:

1. Holistic Approach: Palliative care considers the physical, psychological, social, and spiritual dimensions of a patient's experience.
2. Symptom Management: Effective management of pain and other distressing symptoms is a cornerstone of palliative care.
3. Effective Communication: Open and honest communication between patients, families, and healthcare providers is essential to understand preferences, make informed decisions, and provide psychosocial support.
4. Patient Autonomy: Respecting the patient's wishes and involving them in decisions about their care is crucial.
5. Family-Centered Care: Recognising the importance of the patient's family and providing support to them as they cope with the patient's illness.
6. Interdisciplinary Team: Palliative care involves collaboration between various healthcare professionals, including doctors, nurses, social workers, psychologists, chaplains, and more.
7. Continuity of Care: Palliative care aims to provide seamless care across different healthcare settings and stages of illness. Palliative Care Strategy and Standards

The National Palliative Care Strategy 2018 sets out safety and quality standards for providing palliative care services in Australia.

The following guidelines for end-of-life care have been developed by Palliative Care Australia in conjunction with a range of aged care services. While these principles were developed for the care of older people at the end of their lives, they can also be applied to younger people affected by illnesses that threaten or limit their lives.

1. Consumers physical and mental needs at end-of-life are assessed and recognised.
2. Consumers, families and carers are involved in end of-life planning and decision making.
3. Consumers receive equitable and timely access to appropriate end-of-life care within aged care facilities.
4. End-of-life care is holistic, integrated and delivered by appropriately trained and skilled staff.
5. The end-of-life care needs of consumers with dementia or cognitive impairment are understood and met within residential aged care.
6. Consumers, families and carers are treated with dignity and respect.
7. Consumers have their spiritual, cultural, and psychosocial needs respected and fulfilled. 8. Families, carers, staff and residents are supported in bereavement.

The concept of ‘quality of life’ is an important aspect of palliative care, so we need to be clear about what this concept means. What is quality of life? We often talk about quality of life as if it were an objective description or measure of a state of being. In fact, quality of life is a very subjective concept that means different things to different people.

For example, Person A’s notion of a good quality of life might include being physically active, living in a comfortable house, and having enough money to do pretty much as they like. Person B’s notion of a good quality of life might include living with people they care about, engaging in activities that provide pleasure and joy, and having a clear purpose in life. Essentially, a person’s quality of life depends largely on their perceptions and personal preferences.

The World Health Organisation (WHO) defines QOL as: “an individual's perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns.”

In general, quality of life is measured by a range of factors such as health, living conditions, social connection, safety, and access to basic rights. Within these parameters, individual perception and experience determines a person’s own perception of their quality of life. Within the context of palliative care, the complex concept of quality of life may include basic factors such as comfort, wellbeing, absence of pain, and enjoyment of life, plus the individual’s specific preferences for activities and environment, as well as an element of choice and control over services, care and support. It is important to remember the holistic nature of palliative care. Quality of life does not depend solely on physical wellbeing and comfort, but includes psychological, emotional, cultural and spiritual aspects.

Respecting Preferences and Quality of Life Choices

Respecting the person’s choices and preferences is an important aspect of supporting their quality of life in palliative care. Strategies to achieve this can include:

Palliative care is rooted in a patient-centered approach that places the individual's preferences and values at the forefront of decision-making. One of the core principles of palliative care is to respect the person's preferences for quality-of-life choices. This principle recognises that each person's experience of illness, treatment, and end-of-life journey is unique, and their personal values should guide the care they receive.

Understanding Individual Preferences

Respecting a person's preferences for quality-of-life choices begins with a deep understanding of their wishes, beliefs, and goals. Healthcare providers engage in open and empathetic conversations to comprehend the patient's values, fears, and aspirations. This involves listening actively and creating a safe space for patients to express their concerns, hopes, and expectations.

Tailoring the Care Plan

Once a comprehensive understanding is gained, the care plan is tailored to align with the individual's preferences. This can involve decisions about pain management, treatment options, interventions, and even spiritual or cultural considerations. The care team collaborates with the patient and their family to develop a plan that addresses their unique needs while upholding their values and goals.

Promoting Autonomy and Dignity

Respecting preferences for quality-of-life choices empowers patients to maintain their autonomy and dignity, even in the face of a serious illness. It enables them to retain a sense of control over their healthcare journey, fostering a feeling of ownership and active participation in decision-making. This empowerment can significantly impact their emotional well-being and overall satisfaction with their care.

Advance Care Planning

As part of respecting preferences, advance care planning plays a crucial role. This involves discussing and documenting the patient's wishes for end-of-life care, resuscitation preferences, and other critical decisions. These conversations ensure that the patient's desires are honoured, even when they might not be able to express them directly due to their condition

Emotional and Spiritual Considerations

Respecting preferences goes beyond medical decisions. It extends to emotional and spiritual needs as well. Patients may desire emotional support, counselling, or spiritual guidance to navigate the challenges of illness. By addressing these dimensions in alignment with the patient's beliefs and preferences, palliative care ensures comprehensive and holistic well-being.

Open Communication

Clear and transparent communication is pivotal in respecting preferences. Healthcare providers keep lines of communication open, offering information about treatment options, potential outcomes, and any changes in the patient's condition. This enables informed decision-making and builds a trusting relationship between the patient, their family, and the care team.

In summary, respecting the person's preferences for quality-of-life choices is a cornerstone of palliative care. It acknowledges the uniqueness of each individual's journey, promotes autonomy and dignity, and tailors care plans to honour their values and goals. By upholding this principle, palliative care strives to enhance the patient's well-being and ensure a compassionate and personalised approach to their care.