Palliative care can be initiated in various care settings, including emergency rooms, hospitals, hospice facilities, or at home. For some severe disease processes, medical speciality professional organisations recommend initiating palliative care when diagnosis or when disease-directed options would not improve a patient's prognosis. For example, the American Society of Clinical Oncology recommends that patients with advanced cancer should be "referred to interdisciplinary palliative care teams that provide inpatient and outpatient care early in the course of the disease, alongside active treatment of their cancer" within eight weeks of diagnosis. Appropriately engaging palliative care providers as a part of patient care improve overall symptom control, quality of life, and family satisfaction of care while reducing overall healthcare costs.
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What is palliative care?
Palliative care is specialised medical care for people with severe illnesses like cancer or heart failure. Patients in palliative care may receive medical care for their symptoms, or palliative care, along with treatment intended to cure their serious illness. Palliative care is meant to enhance a person's current care by focusing on the quality of life for them and their family. [1]
According
to World Health Assembly (2014), "palliative care is an approach that
improves the quality of life of patients (adults and children) and their
families who are facing the problems associated with life-limiting illness,
through the prevention and relief of suffering by means of early identification
and correct assessment and treatment of pain and other problems, whether
physical, psychosocial or spiritual." ((NPCS, 2018). [2]
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Palliative
care is specialised medical care for people living with a serious illness. This
type of care is focused on providing relief from the symptoms and stress of the
illness. The goal is to improve the quality of life for both the patient and
the family.
Palliative
care is provided by a specially-trained team of doctors, nurses and other
specialists who work together with a patient's other doctors to provide an
extra layer of support. Palliative care is based on the needs of the patient,
not on the patient's prognosis. It is appropriate at any age and at any stage
in a serious illness, and it can be provided along with curative treatment. [3]
Palliative
care (derived from the Latin root palliare, or 'to cloak'), aka comfort care,
is an interdisciplinary medical caregiving approach aimed at optimising the quality
of life and mitigating suffering among people with serious, complex, and often
terminal illnesses (Zhukovsky D, 2019). [4] Within the published
literature, many definitions of palliative care exist. The World Health
Organization (WHO) describes 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."( WHO, 2003). [5] In the past, palliative care was a disease-specific
approach, but today the WHO takes a more broad approach, that the principles of
palliative care should be applied as early as possible to any chronic and
ultimately fatal illness (Sepulveda et al., 2002). [6]
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Palliative
care is appropriate for individuals with serious illnesses across the age
spectrum and can be provided as the main goal of care or in tandem with
curative treatment. It is provided by an interdisciplinary team which can
include physicians, nurses, occupational and physical therapists,
psychologists, social workers, chaplains, and dietitians. Palliative care can
be provided in a variety of contexts, including hospitals, outpatient, skilled nursing,
and home settings. Although an important part of end-of-life care, palliative care
is not limited to individuals near the end of life (Zhukovsky D, 2019). [4]
Palliative
care, while originally associated primarily with the diagnosis of cancer, is
appropriate for anyone with life-limiting illnesses, including other chronic
conditions, dementia, and nonmalignant degenerative diseases. In the last few
decades, palliative care has become available within almost every healthcare
setting, including neonatal units, paediatric services, general practices,
residential aged care facilities, acute hospitals, and generalist community
services. Palliative care is also provided through specialist palliative care
services which operate from a variety of settings, including specialist
inpatient consulting services, specialist inpatient settings, hospices and
community-based specialist services. Care is also provided in the home, often
by carers supported by home-based outreach services from public, private or
not-for-profit agencies. [2]
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Who can benefit from palliative care?
Palliative care is a resource for anyone living with a
serious illness, such as heart failure, chronic obstructive pulmonary disease,
cancer, dementia, Parkinson's disease, and many others. Palliative care can be
helpful at any stage of illness and is best provided soon after a person is
diagnosed. In addition to improving quality of life and helping with symptoms,
palliative care can help patients understand their choices for medical
treatment. The organised services available through palliative care may be
helpful to any older person having a lot of general discomfort and disability
very late in life. [1]
Evidence supports the efficacy of a palliative care approach
in the improvement of a person's quality of life. [7] Palliative care's main
focus is to improve the quality of life for those with chronic illnesses. It is
commonly the case that palliative care is provided at the end of life, but it
can be helpful for a person of any stage of illness that is critical or any age
(WHO, 2018) [8]
It is estimated that 40 million people worldwide would
benefit from palliative care, but only about 14% receive the care they need.
Palliative care is a fundamental component of universal health coverage. People
receiving palliative care have been shown to have fewer hospitalisations,
shorter lengths of stay when they are hospitalised, and reduced visits to
emergency departments. Those receiving palliative care at home have been shown
to have increased quality of life and reduced need for hospital-based care,
providing cost savings for the government. [2]
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Nature of Palliative Care
Fundamental and
holistic aspects of palliative care
1. a) Provides
relief from pain and other distressing symptoms.
2. b) Affirms
life and regards dying as a normal process.
3. c) Intends
neither to hasten nor postpone death.
4. d) Integrates the psychological and spiritual aspects of patient care. [11]
Six Guiding Principles of Palliative Care
The following six principles are fundamental to good palliative care and are expected to be demonstrated in all service delivery, quality improvement, policy and research development activities. These principles are aspirational statements that are reflected throughout the goal areas of the National Strategy and are written in the present and future tenses to highlight the expectation that each principle will be evident to those receiving and providing palliative care.
1. Palliative care is person-centred care;
2. Death is a part of life;
3. Carers are valued and receive the care they need;
4. Care is accessible;
5. Everyone has a role to play in palliative care; and
6. Care is high quality and evidence-based.
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5 Stages of Palliative Care
Stage 1: Stable (The established plan of care is in place)
• a) Adequately controls existing problems and
symptoms; and
• b) Plans further interventions to maintain symptom
control and quality of life; and
• c) Family & carer situation is relatively
stable, and no new issues are apparent
Stage 2: Unstable (Urgent change in the plan of care or
emergency treatment is required)
• a) Existing problems rapidly increase in the
severity; and/or
• b) New problem(s) develop that were not anticipated
in the existing plan of care; and/or
• c) Family & carer circumstances change that
suddenly impact patient care.
Stage 3: Deteriorating (Plan of care addresses anticipated need and
Care plan needs periodic review, to address expected worsening symptoms and
distress)
• a) Overall functional status is declining; and
• b) Gradual worsening of existing problems; and/or
• c) New, but anticipated, problems develop; and/or
• d) Family & carers experience gradual worsening
distress which impacts patient care.
Stage 4: Terminal
• a) Change in the focus of the plan of care to ensure
physical, psychological and spiritual comfort care, with the provision of
anticipatory end-of-life medications
• b) Death is likely within days
• c) Care plan requires frequent review
Stage 5: Bereavement
• a) Patient has died
• b) Planned provision of bereavement support to
family & carers
Importance of Palliative Care
Palliative care has been around for decades but is still
largely unknown. It helps patients manage the physical, emotional and spiritual
challenges surrounding serious illness on case by case basis using an
interdisciplinary team approach. Often, these challenges involve addressing the
physical symptoms of serious illness, such as pain, nausea, fatigue and
depression, as well as the stress that patients can experience managing their
daily needs and ongoing care. [10]
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Palliative care is an approach that improves the quality of
life of patients (adults and children) and their families who are facing
problems associated with life-threatening illnesses. It prevents and relieves
suffering through the early identification, correct assessment and treatment of
pain and other problems, whether physical, psychosocial or spiritual.
Addressing suffering involves taking care of issues beyond
physical symptoms. Palliative care uses a team approach to support patients and
their caregivers. This includes addressing practical needs and providing
bereavement counselling. It offers a support system to help patients live as
actively as possible until death.
Palliative care is explicitly recognised under the human
right to health. It should be provided through person-centred and integrated
health services that pay special attention to the specific needs and
preferences of individuals.
Palliative care is required for a wide range of diseases.
The majority of adults in need of palliative care have chronic diseases such as
cardiovascular diseases (38.5%), cancer (34%), chronic respiratory diseases
(10.3%), AIDS (5.7%) and diabetes (4.6%). Many other conditions may require
palliative care, including kidney failure, chronic liver disease, multiple
sclerosis, Parkinson's disease, rheumatoid arthritis, neurological disease,
dementia, congenital anomalies and drug-resistant tuberculosis.
Pain and difficulty in breathing are two of the most
frequent and serious symptoms experienced by patients in need of palliative
care. For example, 80% of patients with AIDS or cancer and 67% of patients with
cardiovascular disease or chronic obstructive pulmonary disease will experience
moderate to severe pain at the end of their lives. Opioids are essential for
managing pain.
Opioids can also alleviate other common distressing physical symptoms, including breathlessness. Controlling such symptoms at an early stage is an ethical duty to relieve suffering and to respect a person's dignity. (WHO, 2020). [9]
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a) Palliative care improves the quality of life of patients and that of their families who are facing challenges associated with life-threatening illnesses, whether physical, psychological, social or spiritual. The quality of life of caregivers improves as well.
b) Each year, an estimated 40 million people are in need of palliative care; 78% of the people live in low- and middle-income countries.
c) Worldwide, only about 14% of people who need palliative care currently receive it.
d) Unnecessarily restrictive regulations for morphine and other essential controlled palliative medicines deny access to adequate palliative care.
e) Adequate national policies, programmes, resources, and training on palliative care among health professionals are urgently needed in order to improve access.
f) The global need for palliative care will continue to grow as a result of the ageing of populations and the rising burden of non-communicable diseases and some communicable diseases.
g) Early delivery of palliative care reduces unnecessary hospital admissions and the use of health services.
h) Palliative care involves a range of services delivered by a range of professionals that all have equally important roles to play – including physicians, nursing, support workers, paramedics, pharmacists, physiotherapists and volunteers –– in support of the patient and their families.
Whether you are young or old, sick or well—the one thing we
all have in common is that death will be part of our lives. For those with a
serious, life-limiting condition, palliative care can make it a more positive
experience. Palliative care 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 can also support medical
professionals as their patients transition from receiving treatment that aims
for a cure to care that seeks the best quality of life and symptom management.
[11]
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Role of Social workers in palliative care
Social workers provide unique knowledge and psychosocial
skills for seriously ill patients and their families. Clinicians often
collaborate with social workers when caring for seriously ill patients. They
have unique education, skills, and training essential to the interdisciplinary
provision of holistic, patient-centred care.
Major social work roles for the seriously ill include
providing evidence-based interventions that empower the patient in the context
of their health care and family situation and facilitating a dignified death as
defined by the patient. Social workers attend to family dynamics, assess and
support coping mechanisms and social determinants of health, identify and
facilitate access to resources, and mediate conflicts. Like other members of
the palliative care interdisciplinary team, social workers develop expertise
relative to the patient situation. Palliative care social workers are often
engaged with adjustment to illness, decision-making, and family coping along
the illness trajectory. Hospice social workers are focused more specifically on
the end of life. [12]
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Specialist palliative care social workers can offer a wide
variety of support to both the person and those that are important to them.
This can include sourcing practical help at home, accessing other services,
advice around debt or income maintenance, help with housing, advocacy, working
with schools or employers, or offering psychosocial support. Palliative care
social workers are often skilled in therapeutic work, be it systemic family
therapy, counselling or cognitive behaviour therapy. We often work with groups
as well as individuals. We have a keen interest in working alongside people
with lived experience and including others in how we shape our services and
practice for the future. We undertake work around helping people to prepare for
the end of their lives through advanced care planning and psychosocial
interventions. We provide bereavement care for people who need more specialist
support. [14]
Palliative social workers' core responsibilities include conducting psychosocial assessments, coordinating care, providing counselling and psychotherapy, intervening in client crisis situations, and educating patients and families about their treatment plan and the available resources and support systems. [13]
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Psychosocial Assessments
Palliative social workers conduct psychosocial assessments of patients and their families to determine their psychological, emotional, spiritual, and social needs. Such information is vital for the entire care team so its members can develop an effective and compassionate care plan. These assessments gather critical patient information, including the following:
o past and present medical condition(s);
o previous and current treatment plans and health care teams, including current primary care physicians, specialists, and nurses;
o mental and emotional health data, including past and present psychological, emotional, and behavioural conditions that affect their physical health; and
o social, cultural, financial, and familial considerations, including socio-economic struggles, family conflicts, and engagement and/or disengagement with friends and the community.
After completing the evaluation, social workers write recommendations for the types of psychological and social support patients and their families may need. They also use the information to conduct risk assessments—specialised assessments that determine the likelihood a patient will experience a severely negative outcome.
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Care Coordination
One of the most important services that Palliative social workers provide is coordinating the care of patients in collaboration with a team of medical and human service professionals. Care coordination is the delivery of effective medical, psychological, and/or social care through the organisation of primary and secondary care providers. With their knowledge of systems of care, Palliative social workers serve as important points of contact between different care providers, patients, and the treatment team.
Palliative social workers also play an important role in the patient intake and discharge process. During intake, they gather crucial data from patients upon their enrollment in a care program via the psychosocial assessment, help familiarise the patients and their families with the care environment, and communicate with the treatment team about patients' ongoing needs.
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Counselling and Psychotherapy
Palliative social workers provide emotional support, counselling, and psychotherapy to patients and their family members who experience psychological and emotional challenges during the illness.
They may use a combination of clinical social work modalities to help patients evaluate and manage their thoughts and emotions and overcome behavioural issues. Types of modalities include mindfulness for stress reduction, cognitive behavioural therapy, dialectical behaviour therapy, supportive psychotherapy, expressive arts therapy, and narrative therapy.
Counselling and case management are the main forms of intervention, along with life review and grief support.
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Narrative Therapy
Narrative therapy is a common practice skill for Palliative social workers that can be helpful for those who are grieving. It can provide psychosocial support to families and help patients review their life stories to gain insight and understanding.
A narrative therapist believes in the importance of integrating the patients' stories, so they are better able to consider a broader view of themselves and their situations.
Many people need to tell the stories of their experiences to integrate and explore themes, come to new insights, and better understand the paths they have taken.
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Crisis Intervention
Palliative social workers provide emergency psychological support when patients and their loved ones undergo mental, emotional, social, or familial crises.
Crises typically are defined as events that
cause distress beyond the individuals' ability to deal with them in the near
term. These vary and can include the unexpected advancement of a particular
condition, difficult family conflicts, physical violence, neglect, or verbal
abuse that result in trauma or suicidal ideation.
During a crisis, social workers provide immediate psychological support and counselling while also completing care coordination services by communicating with the rest of the care treatment team so that they can effectively collaborate to resolve the patients' distress.
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Patient Education and Resources
Palliative social workers help patients and families understand their treatment plans. They also educate those who never have experienced a death and who would benefit from learning more about end-of-life issues. Social workers take these individuals through the decision-making process with the help of the nurses and/or physicians. They also help patients and families learn about and access relevant resources. For instance, they might help make sure that Medicare or Medicaid patients apply for much-needed benefits. Social workers also help them connect with local resources, such as specific illness and grief support groups, pro bono counselling services, and religious communities. They also play a key role in the navigation of discharge plans to make sure patients and families receive ongoing support. [13]
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Palliative Care in Bangladesh
National Guideline of Palliative Care
Every individual on this planet has the right to a dignified life and a painless, peaceful exit without much suffering. This should be true even in Bangladesh, one of the most densely populated resource-constrained countries in the world. Unfortunately, here, as in many other developing countries, organised Palliative care is almost non-existent in the general medical and social practices.
WHO defines Palliative Care as the prevention and relief of suffering of adult & pediatric patients and their families facing the problems associated with life-threatening illnesses. However, hundreds of thousands of people in Bangladesh, including children, require palliative care assistance today as they are often diagnosed at the final stages of their non-communicable diseases due to a lack of awareness, early diagnosis and intervention. In a comprehensive study conducted by The Economist in 2015 on the 'Quality of Death' Index, Bangladesh ranked 79th out of 80 countries assessed. In this study, the quality of life was measured with access to palliative care assistance for the general population during the last days of their lives. The Government of Bangladesh has recognised the pertaining need for integrating Palliative Care into mainstream medical practices.
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The country is also a signatory of WHA resolution 67-19, which recommends the integration of palliative care into the mainstream health care service of any country. The document titled "Assessment of Palliative Care in Bangladesh", conducted in 2014 by the Centre for Palliative Care (CPC), Bangabandhu Sheikh Mujib Medical University (BSMMU), in collaboration with the National Institute of Population Research and Training (NIPORT) wing of the Directorate Generals office under the Ministry of Health and family welfare puts forward four suggestions to incorporate Palliative Care as part of the basic healthcare services. The first recommendation was to formulate a National Guideline for Palliative Care.
This guideline describes the basic practices that healthcare providers need to follow, the importance of education and training and policy implementations. Community engagement is also a vital part of achieving optimal and comprehensive palliative care in society, as well as the availability of pain medications. This guideline intends to complement the knowledge of our healthcare providers to ensure quality care for persons with life-threatening diseases across our communities. It is hoped that with the support of this guideline, the medical community will advocate to alleviate pain and suffering and will offer services to those in need of such care. [16]
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Palliative Care in Bangladesh is a basic right
Article 15A & 18(1) of the Bangladesh Constitution instructs on the state the provision of basic medical care mentioned as follows. 15A: The provision of the basic necessities of life, including food, clothing, shelter, education and medical care. 18(1): The State shall regard the raising of the level of nutrition and the improvement of public health as moving its main duties, and in particular, shall adopt effective measures to prevent the consumption, except for medical purposes or for such other purposes as may be prescribed by law, of alcoholic and other intoxicating drinks and drugs which are injurious to health. The concept of palliative care in Bangladesh so far remained limited to the sympathetic caring of the family members toward their loved ones with fatal illnesses. It is clear that palliative care in Bangladesh is set at the basic level, where some could be sought from the extended family care support system. Quality of life (QOL) issues are rarely practised, even in Bangladesh. Furthermore, palliative medicine, in the perspective of total palliative care service, does not have its due recognition in Bangladesh. [15]
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Challenging issues for palliative care in Bangladesh
First of all, misconception comes. The general misconception is that only those who are terminally sick and those whose health centres have given up hopes of any progress need palliative care. Palliative care is an advancement which can improve the quality of patient's life and their family facing the problems associated with threatening illnesses, which is life-taking through the prevention and relief of suffering by means of early identification and faultless evaluation and treatment of pain and other problems like physical, psychological and spiritual.
In an advanced stage of disease, pain is the dominant symptom. Pain makes patients anxious and discomfort and impatient because of constant pain, patients convoy unhappy death. Pain relief can be successfully achieved by the scientific and holistic advance of analgesic supply in palliative care. Lack of knowledge and skill in assessment and improper medication, fear of opioids and addiction are some of the complex obstacles to palliative care. The fear which comes to mind is that drugs (sedatives and opioids) prescribed in the terminal stage may accelerate the death process. Research critics the policies of Dutch end-of-life (EOL) and stated that approximately 20.1% of all deaths were cases in which death happened following amplification of medication to alleviate symptoms of pain. The Moral explanation is to provide analgesia at the final stage of disease with the intention of relieving distress provided that other conditions are satisfied. But the officially authorised explanations of the use of analgesia for palliative care practices are still less clear. [15]
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There are some information gaps also. Death is the most natural thing and certain event in life. But the custom is not to talk about the forthcoming death of a terminal ill patient in many societies in this country. Family members often do not step forward to be the ultimate decision-maker when death is inevitable. For that reason, health care professionals and the Intensive care unit (ICU) may have been challenged to support patients and families only for lack of information.
Sometimes we find that successful resuscitation is not possible, i.e. advanced liver failure and metastatic cancer. In these cases, physicians do not plan to offer cardiopulmonary resuscitation (CPR). In Bangladesh, like some countries of the world, we find that patients and usually family members do not like to perceive the aggressive treatment of end-stage disease on their loved ones and seek the policy of do-not-resuscitate (DNR) in end-of-life care. Physicians need to avoid giving false hope for a cure or false belief. The palliative care team must not hide the truth-telling of the diagnosis abruptly and gently try to break the news on a need-to-know basis. Bangladesh has more than 1 million patients with cancer at any top of time, and about a million suffer from other incurable diseases, i.e. progressive neurological, cardiac and respiratory diseases and HIV-AIDs etc. The practise of euthanasia is legalised in some countries(Netherlands, Belgium, some States of the USA and Australia). Euthanasia poses an ethical dilemma in palliative care. Euthanasia is predominantly the intention of the physician and not the patient's wish. Nevertheless, in some religions and the culture of this country, terminating human life is considered unethical because it violates the ethical belief that life should never be taken intentionally and the fundamental human right is not to be killed. In some circumstances going health services beyond the biomedical model of health and treating the end-stage patients with dignity is a challenging issue. As we know, ethno-specific requirements in exacting society, many of which occur from socio-economic factors and religious beliefs and are tinted by a fatal illness.
Participants identified that pain management was a significant issue. A lack of nurses' ability to advocate effectively for patients because of a lack of relevant skills and knowledge and poor availability of appropriate analgesics was a limiting factor, along with doctors' reluctance to prescribe opioids to manage pain effectively. Lack of resources coupled with lack of training for nurses has a negative impact on palliative care and the delivery of care services to persons living with a human immune virus/acquired immune deficiency syndromes in Botswana.
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Palliative care requires the early identification; thorough assessment; and effective treatment of all problems, physical, psychological, spiritual, and social, in life-limiting illness. There is evidence that palliative care for HIV is effective in the domains of pain and symptom control, anxiety, insight, and spiritual wellbeing; although the literature is limited; most studies predate the availability of antiretroviral therapy (ART), and almost all are of patients with advanced disease, and very few have been conducted in sub-Saharan Africa where two-thirds of people with HIV live. World Health Organization (WHO) policy states that "palliative care should be incorporated as appropriate at every stage of HIV disease, and not only when the patient is dying," and that palliative care should be used alongside ART as needed, not as a substitute.
Conclusion
The overall goal of palliative care is to improve the quality of life of individuals with serious illness, any life-threatening condition that either reduces an individual's daily function or quality of life or increases caregiver burden through pain and symptom management, identification and support of caregiver needs, and care coordination. Palliative care can be delivered at any stage of illness alongside other treatments with curative or life-prolonging intent and is not restricted to people receiving end-of-life care. [17] Historically, palliative care services were focused on individuals with incurable cancer, but this framework is now applied to other diseases, like severe heart failure, chronic obstructive pulmonary disease, multiple sclerosis and other neurodegenerative conditions. (Wikipedia).