Palliative care

Basic Terminologies
Palliative care-The World Health Organization (WHO) defines palliative care as “the active
total care of patients whose disease is not responsive to curative treatment. The goal of palliative
care is achievement of the best quality of life for patients and their families.”

palliative care is being offered to patients with noncancer chronic illnesses, where
comprehensive symptom management and psychosocial and spiritual support can enhance the
patient’s and family’s quality of life.

Palliative care emphasizes

 Management of psychological, social, and spiritual problems in addition to control of

pain and other physical symptoms.
 Provides accompaniment for the patient and family throughout the course of illness;
 supports bereaved family members after the patient’s death, if needed;
 Should be applied by health care workers at all levels of health care systems, including
primary care providers, generalists and specialists in many disciplines and with various
levels of palliative care training and skill, from basic to intermediate to specialist;
When a person is told they need a palliative care, it can be an emotional and confronting thing
for them and their loved ones. It is quite natural to feel afraid when hearing the word ‘palliative
care’ for the first time, but with the right information and support the process can be made easier.

Palliative approach — uses palliative care principles (i.e., dignity, hope, comfort, quality of
life, relief of suffering) with people facing chronic, life-limiting conditions at all stages, not just
at the end of life. It reinforces personal autonomy, the right for persons to be actively involved in
their own care and a greater sense of control for individuals and families. The palliative approach
“does not link the provision of care too closely with prognosis”; rather, it focuses (more broadly)
on “conversations with [people] about their needs and wishes.”

Specialized palliative care — involves a specialist palliative care team or health professional to
augment palliative care, usually in one of two ways:

• assessing and treating complex symptoms

• providing “information and advice to staff about complex issues (e.g., ethical challenges,
family issues, psychological or existential distress)”

End-of-life care — starts in the final stage of dying, then continues until death and into family
bereavement and care of the body. It is provided across all settings across the continuum of care
to relieve suffering and improve the quality of living until death.
Hospice- is a type of care involving palliation without curative intent. Usually, it is used for
people with no further options for curing their disease or in people who have decided not to
pursue further options that are arduous, likely to cause more symptoms, and not likely to
succeed. Hospice care under the Medicare Hospice Benefit requires that two physicians certify
that a person has less than six months to live if the disease follows its usual course. This does not
mean, though, that if a person is still living after six months in hospice he or she will be
discharged from the service.

The principles of palliative care

Palliative care is not simply a process that a patient undergoes in hospital by themselves. It’s a
philosophy that is integrated into their overall care and the care their family receives.

Palliative care;
o Affirms life and regards dying as a normal process
o Neither hastens nor postpones death
o Provides relief from pain and other distressing symptoms
Integrates the psychological and spiritual aspects of care
o Offers a support system to help patients live as actively as possible
until death
o Offers a support system to help patients’ families cope during the
patient’s illness and in their own bereavement

Where can people access palliative care?

Palliative care is provided where the person and their family wants, where possible. It is not
exclusively locked into a clinical or hospital setting.

This may include:

 At home
 In hospital
 In a hospice
 In a residential aged care facility

Many people indicate a preference to die at home and making this possible often depends on
several factors, such as the nature of the illness, the amount of care the person needs, how
much support is available from the person’s family and whether the person has someone at
home who can provide physical care and support for them.
Components of palliative care
The essential components of palliative care are effective control of symptoms and effective
communication with patients, their families, and others involved in their care. Rehabilitation,
with the aim of maximizing independence, is also essential to good care. As a disease progresses,
continuity of care becomes increasingly important—coordination between services is required,
and information must be transferred promptly and efficiently between professionals in the
community and in hospitals.

Essential components of palliative care

 Symptom control
 Effective communication
 Rehabilitation
 Continuity of care
 Terminal care
 Support in bereavement
 Education
 Research
Role of the nurse
Over several years, the hospice palliative care movement has been able to promote palliative care
as a specialized form of nursing practice and has already “irreversibly improved the standards of
care for the dying.” In fact, by addressing care at the end of life, palliative care nursing has
emerged as a unique and highly valued specialty. In keeping with its principles, the nurses who
work in this area focus on enhancing a person’s quality of life, regardless of age, and on
supporting family members and significant others. Palliative care nursing practice is closely tied
to nursing values more generally. All nurses value the right to life and the importance of a
person’s choices, dignity and respectful treatment. Access to pain relief and other symptom
management practices reflected in the care plan are inherent to providing quality care and
dignity in life until death.

Nurses have a fundamental responsibility to alleviate suffering, and the need for effective
nursing support is universal. The Code of Ethics for Registered Nurses is also foundational to
nursing practice. With care of the dying, it counsels nurses to “foster comfort, alleviate suffering,
advocate for adequate relief of discomfort and pain and support a dignified and peaceful death.
This includes support for the family during and following the death.” In addition, the code
considers changes in health-care practices that challenge a nurse’s moral obligations when
providing such care. Overall, the Canadian health-care system needs nurses to provide a
palliative approach to care for the people they interact with, across the lifespan and across the
continuum of care and care settings. Today, nurses in all practice settings directly engage with
people and their human condition, assessing suffering and survival while supporting them as they
progress through death and dying. As a result, nurses play a key role in the palliative approach to
care by

• initiating communication that reflects people’s values and health-care wishes;

• honouring the values and health-care wishes of persons and supporting families;

• advocating for and supporting persons in their experience of living and dying;

• providing comprehensive, coordinated, compassionate and holistic care to persons and their
families;

• attending to pain and other symptom relief and to psychosocial, grief and bereavement support
to maximize a person’s quality of life and death;

• providing a compassionate and therapeutic presence to persons and families, including support
for grief and bereavement, throughout the dying process; and

• advocating for resources that support persons and families in choosing their preferred
environment for a peaceful and dignified death.

In terms of quality palliative and end-of-life care, these are “best provided through the
collaborative practice of an interdisciplinary team to meet the physical, emotional, [psychosocial,
cultural], and spiritual needs of the person and their family.” Nurses today work in collaborative,
interdisciplinary teams while supporting other professionals’ ability to practise with integrity in
delivering optimal palliative and end-of-life care.

The nurse’s role in palliative care encompasses many interconnected dimensions. These
dimensions include: valuing; finding meaning; empowering; connecting; doing for; and
preserving integrity of self and others (Davies & Oberle, 1990, as cited in CHPCA, 2002). While
some of these dimensions are more task-oriented, others are largely attitudinal and reflect the
interpersonal and holistic nature of nursing. They imply that the nurse as a professional cannot be
separated from the nurse as a person, if a therapeutic nurse-patient relationship is to be achieved.
Central to this is the dimension of valuing. The following describe the dimensions of the nurse’s
role:
 Valuing means that the nurse has a basic belief in the inherent worth of all human beings,
regardless of any particular characteristics of any one individual. Valuing allows the nurse to
be able to continue to respect and provide care to the patient, even under adverse conditions
(Davies & Oberle, 1990).
 Finding meaning means that the nurse is able to assist patients to find meaning in their
situations. This includes helping patients to focus on living until they die, helping them to
make the best of their situation, offering hope, encouraging reflection on their life, helping
them to fulfill spiritual needs, and acknowledging death by talking openly about death when
patients and families want them to do so (Davies & Oberle, 1990).
 Empowering involves facilitating, encouraging, defusing, mending, and giving information.
Facilitating builds individual and family strengths. The nurse facilitates by involving the
patient and family in planning strategies, offering suggestions, explaining options, and
providing information. Through these actions the nurse shows respect for the patient and
family’s right and ability to make decisions. The nurse also recognizes limitations and helps
them to work toward a more positive outcome. Encouraging is when the nurse acknowledges
patient and family abilities, supports choices, and encourages patients and families to do
what they choose. Defusing is helping the patients or families to deal with their negative
feelings and giving them permission to express them. By listening openly and not acting
defensively, the nurse allows the person to ventilate their anger. Mending means the nurse
helps to facilitate healing between family members by interpreting behaviours and enabling
individuals to see each other’s point of view. Giving information pertains to the nurse’s
teaching and explaining about medications, changes, and pain and other symptoms. This
strengthens the patient’s and family’s capacity to manage for themselves (Davies & Oberle,
1990).
 Connecting refers to the nurse making contact with the patient and establishing a therapeutic
relationship. This involves introductions, establishing credentials, explaining roles, collecting
baseline information, and explaining how to contact the nurse (Davies & Oberle, 1990).
 Doing for is focused on the physical care of the patient. It involves controlling pain and
symptoms, making arrangements such as discharge planning and helping families to access
equipment, and helping with hands-on care. Team collaboration is also a component of
doing for. Team collaboration involves negotiating the system on behalf of the patient and
family, consulting with other team members, sharing information, serving as a liaison
between various institutions and programs, mediating on behalf of the family and often
explaining, encouraging and pleading for the benefit of the patient and family (Davies &
Oberle, 1990).
 Preserving own integrity refers to the nurse’s ability to maintain feelings of self-worth,
selfesteem, and energy levels in the face of routine exposure to suffering, pain and loss. This
involves reflecting on what the nurse regards as important and gives meaning to life and the
work that the nurse is doing. It is also influenced by the nurse’s evaluation of the care he/she
has given to a patient and feeling that it has helped the patient. Self-awareness, being able to
acknowledge his/her own feelings and reactions is also integral to preserving one’s own
integrity. This enables the nurse to assess whether he/she is doing the right thing for the right
reason and helps him/her to maintain perspective, as well as an awareness of one’s own
limitations. The nurse needs to accept that he/she cannot do all and be all to everyone and
know when to draw the line. Otherwise exhaustion will result (Davies & Oberle, 1990). The
system needs to ensure that resources are in place to prevent nurse burnout and compassion
fatigue.

Nurses’ roles include active participation in clinical care, education, inter-professional

collaboration, system capacity, competence in palliative care, research, and policy development.
Palliative Care, guided by the Principles of Primary Health Care, would extend the nurse’s role
to include that of advocate. Primary health care in this context extends beyond the health care
system itself to include accessibility, community care, and the social determinants of health.
Nurses also play a role in supporting the family and inter-professional team. Palliative care is
central to expressing and reflecting the essence of nursing and nursing care because it
encompasses spiritual, emotional, family, and other non-clinical dimensions.

Effective pain management is integral to patient safety, a quality work environment, and ethical
nursing practice (Anwari, 2008; Peter & Watt-Watson, 2002; Pierce, Dalton, & Duffey, 2001;
Rees, King, & Schmitz, 2009; Sabo, 2006; Safran, Miller, & Beckman, 2006). Ineffective pain
management affects the overall health experience of many patients and their families, and places
patients at increased risk for morbidity and mortality. In fact, “inadequate pain relief hastens
death by increasing physiological stress, potentially diminishing immunocompetence, decreasing
mobility, worsening proclivities toward pneumonia and thromboembolism, and increasing work
of breathing and myocardial oxygen requirements. Furthermore, pain may lead to spiritual death
as the individual’s quality of life is impaired” (Ferrell & Coyle, 2006, p.133). Also “ineffective
pain management disrupts the relationships between nurses and their patients between nurses and
physicians, and between nurses and other professionals; it is a factor that affects the quality of
nurses’ work life” (Canadian Nurses’ Pain Issues Working Group, 2005, p. 1, also supported by
Maher & Hemming, 2005). Thus, effective pain care is a moral imperative for palliative care
Nurses
.
These guiding principles underpin the following requisite general and specific/core competencies
for nurses caring for individuals and families who are facing the end of life. The general
competencies that are described below are those required for all registered nurses and are thus
expected from any nurse providing palliative and end-of-life care. The specific competencies are
intended to address particular issues and needs that contribute to suffering and impact on quality
of life in patients who are dying or living with advanced or life-limiting illness.

General competencies

1. Engages in relational practice, which is characterized by: skill with listening; the ability
to engage in difficult conversations; the ability to be present with patients;
responsiveness; respect for lived experience and meanings arising; appreciating patient
and family choices and strengths; collaborative care and fostering dignity.
2. Demonstrates knowledge of and skill in utilizing the principles and standards of palliative
and end-of-life care in a culturally relevant Canadian context.
3. Uses reflexivity in practice, reflexivity being defined as the ability to critically reflect on
the values, beliefs, and assumptions underpinning culturally relevant practice and
awareness of the system level influences and discourses that impact on the caring
process.
4. Practices according to the CNA Code of Ethics and Standards for Nursing Practice.
5. Demonstrates intentionality in practice, intentionality being defined as the congruence
between espoused knowledge, values, and beliefs and those used in practice (Doanne and
Varcoe, 2005).
6. Engages in patient/family-centered care defined as a relational practice that focuses on
family as defined by the patient (Doane & Varcoe, 2005).
7. Utilizes evidence-based practice, defined as an approach to decision making in which the
clinician uses the best evidence available, in consultation with the patient and family to
decide upon which course of action is most appropriate.
8. Shows ability to collaborate inter-professionally to address patient/family needs. Inter
professional collaboration is practice that integrates concepts and knowledge from all
involved health disciplines/professions, and includes anyone who works under a formally
accredited organization. It includes volunteers who are under the supervision of the
organization (thus differentiating them from family members who provide care).
9. Practices advocacy defined as: “the process wherein the nurse, knowledgeable of the
socio-political context, acts on behalf of the patient or the nursing profession to assure the
delivery of quality nursing care and to promote professional standards of practice. The
 skills of advocacy include mediating, coordinating, clarifying, resolving conflict, and
assisting the patient to acquire, interpret, and utilize health care information.”

REFERENCE
1. The Principles and Practice of Palliative Care Nursing and Palliative Care Competencies
for Canadian Nurses (September 2009)
2. Joint Position Statement – The palliative approach to care and the role of the nurse
3. Integrating palliative care and symptom relief into primary health care: a WHO guide for
planners, implementers and Managers ISBN 978-92-4-151447-7
4. ABC of palliative care, Principles of palliative care and pain control by Bill O'Neill,
Marie Fallon