Palliative Care

Question 1

What is the definition of palliative care?

Answer 1

The 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’

Question 2

What does palliative care do?

Answer 2

• provides relief from pain and other distressing symptoms
• 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 patients’ 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
• 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.

Question 3

What is the definition of a hospice?

Answer 3

“Hospice care is end-of-life care provided by health professionals and volunteers.

They give medical, psychological and spiritual support.

The goal of the care is to help people who are dying have peace, comfort and dignity.

The caregivers try to control pain and other symptoms so a person can remain as alert and comfortable as possible.

Hospice programmes also provide services to support a patient’s family.”

Question 4

What is the difference between life-threatening palliative care, and life-limiting palliative caer?

Answer 4

• Life threatening palliative care refers to ‘paediatric palliative care’. Life limiting refers to ‘adult palliative care’.
• Both are so much more than end of life care

Question 5

What is suffering in relation to palliative care?

Answer 5

• Suffering is health-related when it is associated with illness or injury of any kind.
  Suffering is serious when it cannot be relieved without medical intervention and when it compromises physical, social, spiritual+, and/or emotional functioning.
• ‘‘Serious illness is a condition that carries a high risk of mortality, negatively impacts quality of life and daily function, and/or is burdensome in symptoms, treatments, or caregiver stress”.

Question 6

What does palliative care include?

Answer 6

• Includes:
  
  • prevention, early identification, comprehensive assessment and management of physical issues, including pain and other distressing symptoms,
  • psychological distress,
  • spiritual distress
  • social needs
• Whenever possible, these interventions must be evidence based.
• Provides support to help patients live as fully as possible until death by facilitating effective communication, helping them and their families determine goals of care.
• Is applicable throughout the course of an illness, according to the patient’s needs.
• Is provided in conjunction with disease modifying therapies whenever needed.
• May positively influence the course of illness.

Question 7

What are the principles of palliative care?

Answer 7

• New definitions of palliative care are more quantitative so that further research can be achieved
• Intends neither to hasten nor postpone death, affirms life, and recognizes dying as a natural process.
• Provides support to the family and the caregivers during the patient’s illness, and in their own bereavement.
• Is delivered recognizing and respecting the cultural values and beliefs of the patient and the family.
• Is applicable throughout all health care settings (place of residence and institutions) and in all levels (primary to tertiary).
• Can be provided by professionals with basic palliative care training.
• Requires specialist palliative care with a multiprofessional team for referral of complex cases
  *

Question 8

What is the definition of palliative care with regards to children?

Answer 8

• 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.
• It can be provided in tertiary care facilities, in community health centres and even in children’s homes.

Question 9

What is the new model for palliative care?

Answer 9

While disease treatment/curative measures is occurring, supportive treatment occurs during this period (in the new model).

Berevement is a followup

Question 10

What is the relationship between curative and palliative care?

Answer 10

• The aim of palliative care is to relieve suffering in order to improve quality of life for those with serious health related suffering.
• Persons receiving palliative care have a right to choose their treatments and may also receive curative treatments or interventions alongside palliative treatment.
• Palliative care professionals closely monitor symptoms and will advise if curative treatments may be adding to the person’s suffering thus allowing them to make informed choices as illness progresses or improves.

Question 11

What is The concept of Total Pain?

Answer 11

Saunders (1963)first described the concept of total pain (Table 1)6 and interaction among the various sources of pain and suffering.7 Total pain is the sum of the patient’s physical, psychological, social, and spiritual pain. This concept is central to the assessment and diagnosis of pain and suffering.

Because psychological distress, lack of social support, and physical pain are associated,8 treating a patient’s total pain is imperative, especially at the end of life. Optimal pain relief will not be possible unless all the elements of total pain are addressed. Clinicians should utilize other members of the multidisciplinary team, such as social workers and chaplains, to better treat suffering related to the different domains of total pain.

Question 12

What are the four concepts of total pain?

Answer 12

• physical symptoms
  
  • Oftem multiple, must be specifically diagnosed and treated
• mental distress
  
  • Maybe anxiety, and depression are critical components of pain that must be addressed by the physician in cooperation with other healthcare professionals
• social problems
  
  • Often interpersonal problems including lonliness, finanncial stress, family tensions, are often interwoven into the fabric of a patient’s symptoms
• emotional problems
  
  • a sense of hoplessness and a desperate search for meaning that can cause severe suffering that is unrelieved by medications.

Question 13

In what ways would you manage physcial pain?

Answer 13

• one of the most prevalent symptoms near the end of life.
• Unrelieved pain can be a source of great distress for patients and families and exacerbate other symptoms.
• Therefore, the adequate management of pain at the end of life is imperative.
• Although opioid analgesics are the standard of care for treating moderate to severe pain in patients with advanced illness, the false fear that opioids induce respiratory depression and hasten death is a major barrier to their use at the end of life.
• However, both effects are uncommon when opioids are given at appropriate doses.
• Clinicians who care for the chronically ill and for those at the end of life should acquire competency in pain management

Question 14

How would you manage dyspnea (breathlessness)?

Answer 14

. Opioids and benzodiazepines are the most widely prescribed medications for treating dyspnea.

IV infusions

Question 15

How would you manage restlessness?

Answer 15

Delirium and restlessness at the end of life are usually characterized by anguish (spiritual, emotional, or physical), anxiety, agitation, and cognitive failure

There are signs like the skin mottling, calling out for dead relatives, talking about taking a long trip, respirator pattern changes

The treatment of terminal delirium usually requires the use of a major tranquilizer such as haloperidol.

Question 16

How would you respond to a death rattle?

Answer 16

The death rattle of the actively dying is the sound of air movement across pooled secretions

Repositioning the patient’s head and using anticholinergics such as atropine or scopolamine are the mainstays of treatment

Question 17

How would you provide psychosocial, spiritual and bereavement suppoort?

Answer 17

A comprehensive psychosocial and spiritual assessment allows the team to lay a foundation for healthy patient and family adjustment, coping, and support. Skilled expert therapeutic communication through facilitated discussions is beneficial to maintaining and enhancing relationships, finding meaning in the dying process, and achieving a sense of control while confronting and preparing for death

Compassionate palliative care requires a professional readiness of those specialized in this field to explore the integrity-preserving issues that will foster growth in dignity and transcendence. Reflective open-ended questions are key in optimizing this communication and assessing the willingness of the patient and caregivers to engage. Physicians, psychologists, nurses, social workers, and chaplains can assimilate and negotiate the interpersonal relationship skills and intimacy required to enhance the patient’s peace and psychosocial spiritual comfort

Question 18

Why is palliative care a human rights issue?

Answer 18

Under international law, there are two main sources for this right: the right to health and the right to be free from cruel, inhuman and degrading treatment.

Health care includes palliative care.

Nations have many obligatins regarding healthcare, including access to healthcare facilitie, goods and services on a non-discriminatory basis

. In the context of palliative care it is clear that patients with life-limiting illness should have access to appropriate health care, basic medications for symptom control and terminal care, as well as inclusion of palliative care in national health care policies

The UN Committee on Economic, Social and Cultural Rights stated that it is critical to provide “attention and care for chronically and terminally ill persons, sparing them avoidable pain and enabling them to die with dignity

The WHO has stated that access to Essential Medicines is part of a nation’s human rights obligations.7 Fourteen palliative care medications are currently on the WHO Essential Drug List

Question 19

What is the world health assemby’s resolution on palliative care?

Answer 19

In 2014 the World Health Assembly unanimously passed resolution WHA.19 “Strengthening of Palliative Care as a Component of Comprehensive Care Throughout the Life Course.”17

This resolution calls on all member states to strengthen and integrate palliative care throughout their health care systems following the WHO public health model, which includes ensuring that policies are in place, comprehensive education on palliative care is available, essential palliative care medicines are available and affordable, and that programs are funded and implemented.

Question 20

What does the WHO focus on palliative care:

Answer 20

• integrating palliative care into all relevant global disease control and health system plans
• developing guidelines and tools on integrated palliative care across disease groups and levels of care, addressing ethical issues related to the provision of comprehensive palliative care
• supporting Member States in improving access to palliative care medicines through improved national regulations and delivery systems
• a special focus on palliative care for people living with HIV, including development of guidelines
• promoting increased access to palliative care for children (in collaboration with UNICEF)
• monitoring global palliative care access and evaluating progress made in palliative care programmes
• developing indicators for evaluating palliative care services
• encouraging adequate resources for palliative care programmes and research, especially in resource-limited countries
• building evidence of models of palliative care that are effective in low- and middle-income settings.

Question 21

Why is palliative care important for Universal health coverage and equity?

Answer 21

The 2015 UN Sustainable Development Goals are the roadmap to improving life on earth. The continuum of universal health coverage under the United Nations Sustainable Development Goal number three (3.8) includes Promotion, Prevention, Treatment, Rehabilitation, & Palliative Care. There is no ‘universal’ health coverage without palliative care. All nations need to include palliative care in their plans for Universal Health Coverage.

Question 22

What is the problem with measuring palliative care in QALYs and DALYs?

Answer 22

• The problem with DALYS is that they are measured In years. Some people do not have even up to a year to live. Therefore the DALY is going to be really low all the time!
• Measuring impact of palliative care is difficult
• Can you work out the QALY impact
• Validated scales are key
• Always check – have the scales been validated in the setting they are used in?
• African APCA POS

Question 23

What is the global need for palliative care?

Answer 23

• The need for palliative care (PC) is rapidly increasing across the globe.
• This is due to the rising aging populations, successes in utilizing new technology to prolong lives of individuals with serious illnesses, globalization of unhealthy lifestyles, rapid unplanned urbanization, and increases in cancer and other noncommunicable diseases.[1,2]
• Yet, there is significant disparity in the provision of PC for individuals with serious and/or life-limiting illnesses.[3] The World Health Organization (WHO) speculates that of the 40 million people in need of PC worldwide, only 14% receive it,[4] implying that many people lack access to PC services, thereby limiting the quality of life they live.
• In addition, 78% of individuals in need of PC live in the Global South.[4]

Question 24

What is the proportion of adults who need palliative care?

Answer 24

▪ The highest proportion (78%) of adults in need of palliative care at the end of life live in low and middle-income countries, but the highest rates are found in the higherincome groups.

98% of children requiring palliative care are in low and middle-income countries.

Those dying from non-communicable diseases represent around 90% of the burden of end of life palliative care.

Question 25

How many adultsa have experienced serious health-related suffering?

How many have died ftrom serious health related suffering (SHS)?

Where is the burden of SHS?

What are the SHS projections?

Answer 25

• 61 million people experienced SHS in 2015. 25.5m of them died (45% of total deaths)
• Half of adults, and a third of children who died experienced SHS
• 81% of SHS associated deaths occurred in LMIC’s
• 48 million will die with SHS by 2060, 83% in LMIC’s, 155% rise in LIC’s

Question 26

what is the paediatric need for palliative care?

Answer 26

• Global Survey 2014-2015:
• Need for children’s palliative care ranged from almost 120 per 10,000 children in Zimbabwe to slightly more than 20 per 10,000 in the United Kingdom.
• Over 21 million with conditions that will benefit annually from a palliative care approach
• 8 million need specialized children’s palliative care worldwide

Question 27

What type of system must we use to observe pain?

Answer 27

Must need a local universal scale to observe the pain and different symptoms:

• Like the The African Palliative Care Association (APCA) African Palliative care Outcome Scale (POS)
• Example: Kampala, Uganda
• Mulago Hospital

Question 28

What is the origin of the Palliotive care outcomes scake

Answer 28

The POS was developed in 1999 by Professor Irene Higginson, Head of the Department of Palliative Care and Director of Cicely Saunders Institute, King’s College London and colleagues, for use with patients with advanced disease and to improve outcome measurement by evaluating many essential and important outcomes in palliative care. The Support Team Assessment Schedule (STAS), developed in 1986, was the precursor to POS.

STAS was constructed to evaluate the work of palliative care support teams and consisted of 17 items, to be rated from 0 (best) to 4 (worst) by a professional caring for the patient.

The POS builds on some of the strengths of the STAS, such as clinical application and ease of use. Importantly, it also allows patients to use POS themselves.

POS is therefore a patient reported outcome measure when the patient version of it is used. POS has demonstrated construct validity acceptable test/re-test reliability for seven items, and good internal consistency. POS takes less than 10 minutes to complete by staff or patients.

Question 29

What is The African Palliative Care Association (APCA) African Palliative care Outcome Scale (POS)

african APCA POS score?

Answer 29

The APCA POS was adapted for African use from the original POS, through a multi-dimensional and team process, led by Dr Richard Harding of King’s College Department of Palliative Care, in close collaboration with APCA. It was piloted in 11 sites in 8 Eastern and Southern African countries: Botswana, Kenya, Malawi, South Africa, Tanzania, Uganda, Zambia and Zimbabwe. It was validated across 5 African services. 4 The POS has 10 questions, addressing the physical and psychological symptoms, spiritual, practical and emotional concerns and psychosocial needs of the patient and family. Questions 1-7 are directed at patients; questions 8-10 are directed at family and other informal caregivers. Although all answers are selfreported by patients and families, the responses are recorded by staff because of low levels of literacy in some communities.

Question 30

What is the impact of the POS?

Answer 30

. Providing palliative care faces many of the same problems as providing all health care: poverty; weak economies and health systems; a lack of healthcare professionals and, in many cases, patients living in isolated rural areas far from healthcare facilities and with poor transport facilities5 . In addition, for those delivering palliative care, it is particularly challenging to assess very ill and vulnerable patients and to ensure that the full range of their needs is understood and addressed. Against this difficult background the POS helps enable those delivering palliative care at home and in healthcare institutions to ensure that the patient and their family is getting the best care available. Because the POS asks simple, direct questions, repeated over a short period (ideally seven days), it enables the palliative care team to assess and adjust the care given quickly, while a more detailed analysis of results gives an overview of areas for improvement in service delivery.

In addition it is being used increasingly in research and as a method of demonstrating value to donors. It is a powerful advocacy tool as it can demonstrate objectively improved outcomes for patients and families receiving palliative care

Question 31

Case study of the AFRICAN APCA POS Score being used (Kampala, Uganda)

Answer 31

46% of inpatients in a point prevalence survey in Mulago Hospital, Kampala had an active life limiting disease (68% of medical inpatients).

Harding et al - 112 patients - mean number of symptoms was 18 (SD = 6.6).

The five most prevalent symptoms were pain (87.5%), lack of energy (77.7%), feeling sad (75.9%), feeling drowsy (72.3%) and worrying (69.6%).

Question 32

Second case study of the African APCA POS system being used

Answer 32

• Senegal- Tertiary hospitals
• 376 inpatient files reviewed
  
  • 44.4% were found to have an active life-limiting illness,
• Four disease groups made up 78.6%
  
  • cancer (32.9%).
  • stroke (19.8%).
  • chronic heart failure (18.0%).
  • HIV (7.9%).

Question 33

What are the direct impacts of the african APCA POS Score for palliative care?

Answer 33

• Impact on Patients:
• Five year programme in South Africa (2005-10) funded by the Canadian International Development Agency
• nvolved 50 hospices with home based care programmes using the APCA POS for quality improvement. Results were analysed by the University of Cape Town and showed statistically significant changes e.g. a reduction from 4 -1 in pain over six weeks and 4-1 in worry
• ‘the data itself, having hundreds of people living with HIV and/or cancer being “measured” has given us valuable insight on the quality of care in these rural sites, especially during the time before they could access oral morphine” which is crucial to controlling pain’-Dr Kristopher Hartwig

Impact on STAFF:

• The POS impacts staff attitudes and understanding, identifies further training needs and can improve morale
• Where staff teams are overstretched, it is easy for them to burn out, for standards to slip and for the benefits of the work to seem doubtful. Use of the POS can improve morale and help prevent this
• Use of the POS can also identify training needs of staff and a lack of particular professional skills. As a result of seeing from the POS analysis that pain control was better managed in patients under the care of nurses with a formal qualification in palliative care
• Several organizations mentioned that use of the APCA POS had improved referral systems. At Verulam Hospice “(The POS) enabled the carer to measure the degree of the patient’s pain regularly. For pain control, patients were promptly referred to the interdisciplinary team, hospitals and doctors

Impact on families:

• One crucial example is the impact of effective pain relief. Analysis of the data obtained from the POS also had an impact in looking beyond the immediate clinical needs of the patient.
• Most of the organizations contacted said that analysis of POS data had uncovered unmet needs in this group, which they then addressed
• There has also been impact in empowering carers and families to look after patients better
• “The POS visits resulted in a better relationship between the patient and family and enhanced family support. Through education and counseling sessions all questions were truthfully answered and adequate information of the illness was imparted to both patient and family, therefore the patient and family were more knowledgeable and were equipped to cope with the illness”

Question 34

What are the indirect effects of the POS system?

Answer 34

The POS has an important role in evaluation. For example, the former M&E manager, Chenjerai Sisimayai said of Island Hospice Zimbabwe, “The POS gave Island an opportunity to track progress at all levels of the organisation’s results chain or theory of change, including the quality of care of caregivers and the quality of life of patients” Not only has focusing on patient outcomes become embedded in the culture of Island Hospice but it also demonstrates to donors, partners and beneficiaries the positive changes being made by palliative care provision. In the three sites of Hospice Africa Uganda, the POS is being used as a proxy for a patient satisfaction survey in reporting to a major bi-lateral donor, as well as for quality improvement.

Operational research using the POS impacts care both by demonstrating better ways of delivering care and by providing an evidence base for palliative care organizations to take to advocate for funding from donors and for inclusion of palliative care in government health policies. It has also been used by Dr Jacinto Amandua, the Commissioner for Clinical services in the Ministry of Health in Uganda to assess the palliative care needs of hospital patients.

Question 35

What is the global provision of palliative care?

Answer 35

• In 2011: 136/234 countries (58%) had at least 1 PC service (9% increase since 2006)
• Level 1: 75 (32%) Level 2: 23 (10%) Level 3a: 74 (31.6%) Level 3b: 17 (7.3%) Level 4a: 25 (10.7%) Level 4b: 20 (8.5%)
• Range of services : popn. across level 4 service
• (a + b) = 1: 34,000 (Austria) 1: 8.5 M (China

Question 36

WHAT DOES THE MAP OF PALLIATIVE CARE SERVICES LOOK LIKE IN AFRICA?

Answer 36

Question 37

What are the different models of care (provision of care) that are in this lecture?

Answer 37

UK

UGANDA (Kampala)

Kerala India

Question 38

What is the UK model of palliative care?

Answer 38

▪ Hospital, hospice and homecare teams ▪ NHS and third sector funding ▪ Specialist inpatient beds – usually in hospices ▪ Specialist home care teams ▪ Specialist support to existing homecare teams, eg social care, District nurses, GP’s etc ▪ Recognised medical speciality by Royal College of Physicians ▪ Consultants trained only as pall med clinicians ▪ Clinical nurse specialists, independent practitioners and prescribers