1. Palliative Care CHCPA301B

2. INTRODUCTION: Learning Outcomes:
Understand a Palliative Approach and support the incorporation and ongoing management of ACD’s within the care plan.
Be able to support clients to identify their preferences for quality of life choices.
Be able to take action to assess and alleviate pain and other end of life symptoms.
Identify and manage own responses in self and others.

3. ASSESSMENTS
There are 3 parts to this assessment.. Students must pass each part.
PART A: Open book take home quiz.
PART B: Case Study. Mr W.
Part 3: Role play, day 2 in class.
The assessments are due in 2 weeks.

4. What is palliative care.
What does it mean to you?

5. What is Palliative Care?
A Palliative Care approach aims to improve the quality of life for a person who is dying and their family, whether as a result of disease, illness or the ageing process.
The word ‘palliate’ means to relieve; palliative care therefore is care that relieves the physical and mental distress of dying.

6. What is palliative care? continued
Palliative care is a multi-disciplinary approach that involves medical, psychological and spiritual responses to the dying person, their family and friends.
People are usually encouraged to live as actively as possible until death
Palliative care affirms life and regards death as a normal part of life.

7. Definition: World Health Organization 2002
Palliative care is an approach that improves the quality of care 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.

8. Dying in Australia 134,000 deaths in Australia each year
64,000 are considered to be ‘expected deaths’ – when death is related to a diagnosed life limiting illness
1/3 of patients whose death is expected are seen by palliative care services with the balance by primary care services
Responsibility to all Australians

10. WHERE can a palliative approach be provided?
A palliative approach can be used in any setting.
A palliative approach can be provided in the resident’s familiar surroundings if adequate skilled care is available, which reduces the need for transfer to an acute setting; thereby, avoiding potential distress to the resident and his/her family.
The reality of the above should be discussed early in the care planning.

11. WHO can provide the care??
A palliative approach is best provided by a multidisciplinary team. They may include:
# Specialist Physicians and GP’s
# General nurses # Specialist nurses
# Volunteers # Pharmacists
# OT’s # Physiotherapist
# Social workers # Dieticians
# Carers #Diversional Therapist
#Chaplains # Pain specialist

12. WHO DECIDES??
The decision to implement a palliative approach should not be based on the individual’s clinical stage or diagnosis; rather, it should be offered according to the needs of the individual.
The decision to consider a palliative approach should be made in collaboration with the resident, the family and the team.
Lack of openness with residents and their families may lead to conflict and confusion about care goals.

13. ADVANCED CARE PLANNING
Advanced care planning empowers the person to state their wishes in writing, in accordance with how they define quality of life.
By doing so, the burden of responsibility is removed from the surrogate and control is maintained by the resident.
As with preparing of a will, the plan cannot be attended too early.
When the time comes and the resident is no longer able to validate decisions it will be of great comfort to loved ones knowing the decisions they are maintaining were those chosen.

14. An ACD can be an individual process, and does not have to involve family members. However, evidence suggests that many people prefer them to be involved.
The process of advanced care planning may provide opportunity for discussing dying wishes, settling interpersonal differences, may prevent later conflict over substitute decisions about treatment, and improve communication amongst the family members.
Advanced care planning is a continuum of treatment choices that may be reviewed as the persons condition, and possibly preferences change.

15. End of life strategies:
Goals of treatment may need to be re-negotiated several times.
Good open communication, regular team meetings, continuity of care (nursing and medical),
a culture which values challenging and constructive debate –
all these contribute to improving team functioning which is an essential factor in managing the complex interface between acute and palliative care.
Sensitive and careful management of the transitional phases in disease is integral to successful palliation

16. For patients and their families quality of life will be maximised where the goals of palliative care are valued, and expert symptom management is practised.
An understanding of the psychosocial stressors involved in experiencing chronic illness will assist in good communication, both within the health care team and the patient/family.
Respect for the ability of the patient and family to participate in their own care is fundamental to the practise of palliation

17. Legal Issues in palliative care
Nurses working in palliative care need to practise within the legal controls of the jurisdiction in which they practise and adhere to the procedural guidelines.
Pain management is a fundamental part of palliative care and one that has civil and criminal implications.
The importance of accurate documentation cannot be overstated.
An advanced care directive that complies with the requirements is legally binding in NSW.
Failure to comply with ACD may result in the health professional incurring criminal or civil liability.

18. Patients Rights The right to choose or refuse:
While a patients consent cannot justify that which the law forbids, for example the direct taking of life, it can justify that which the law allows, for example, the termination and refusal of medical treatment.
A person is completely at liberty to undergo treatment, even if the result of doing so will be that he dies
( Kennedy and Grubb, 1994: 163, )

19. Before life-sustaining treatment is discontinued the patient must be:
competent
free from coercion or controlling influence
fully aware of the implications of the proposed course of action.
Legislation allows a person to appoint someone to make decisions about medical treatment on their behalf if they become incapable of making decisions for themselves.
Such an appointment is made under the ‘enduring power of attorney (medical treatment)’, also referred to as a ‘living will’

20. Cultural Issues:
Culture is a way of life that is shaped by values, beliefs and practises that are learnt from experience of being in the world and from experiences transmitted through generations.
All residents require careful assessment to ensure assumptions are not made for cultural needs based on a resident’s language ability alone.
To provide cultural appropriate palliative care requires first that a persons culture is understood and, secondly, that health care staff respect that culture.
Australia is a multi cultural country. It is also possible that the family unit comes from more than one culture. This may require unique handling.

21. Approximately 120 residential services provide care operated by ethnic community organisations, with additional community resources specifically allocated for Aboriginal and Torres Strait Islander people and those from a diverse range of cultural and linguistic backgrounds.
A specific program known as Partners in cultural Appropriate care operates throughout Australia. Contacts:

22. Multicultural Health Communication service Website: www. mhcs. health
Multicultural Health Communication service Website:
Transcultural Aged Care Services (NSW)
(02)
Ethnic Communities Council of QLD
(07)
Multicultural Aged Care (SA)
(08)
Migrant Resource (TAS) (03)
Anglican Aged Care (VIC) (03)
Multicultural Aged Care (WA) (08)

23. Spiritual Care:
Spiritual care involves assisting people to articulate those things that are important to them personally.
Spiritual care involves sensitive listening, rather than providing answers. It is not necessary for the nurse to share the same spiritual beliefs as the person in order to understand the persons spiritual needs, nor is it the aim of spiritual care to impose your own views onto that person.
It is important that every effort is made by staff to enable the person to have access to spiritual supports and spiritually related items.

24. COMMUNICATION
Redpath (1998) suggests that communication skills of the health professional are central to successful patient decision making, and negotiation of optimum palliative care outcomes.
It is also said that nurses are the most frequent observers of patients’ psychological and emotional responses to illness and treatment (Fincannon,1995).
Therefore it is important to acknowledge the valuable role communication and negotiating skills can play in palliative care.

25. Cultural context of communication
When learning English as a new language, people go through 5 stages.
Hearing what is said in english.
Translating it into their own language.
Constructing the response in english.
Responding in English.
When broken down in this way, the room for error is obvious.
Clear communication is an essential component of palliative care so language barriers need strategies put in place to overcome them.

26. Dealing with conflict & resolution
CONFLICT results from individuals or groups wanting different things. Differences can include:
Differences in values, Different interpretation of the facts, Different ideas.
NEGOTIATION is a process of collaboration. It employs the skill of:
Listening, questioning, Speaking and Body language.

27. Body language in communication
Nonverbal communication, known as “body language” sends strong positive and negative signals. This is how much it influences any message:
Words 8%
Tone of voice 34%
Non verbal cues 58%
Body language speaks for itself and can be of enormous comfort to the patient and carers …… it can also create the opposite.

28. The power of listening
Sometimes in palliative care it is more important to listen than to speak.
Sometimes patients and carers alike want to discuss their fears but don’t want to burden their loved ones and they will turn to you.
The philosopher Epictetus stressed the power of listening in this quote:
“Nature gave us one tongue and two ears so we could hear twice as much as we speak”

29. Consenting to or refusing food is an expression of a persons autonomy.
NUTRITION AND HYDRATION:
Consenting to or refusing food is an expression of a persons autonomy.
One of the most difficult ethical issues that families and health care workers confront is uncertainty about how to manage residents who refuse food and / or fluids.
‘There is little evidence that tube feeding substantially prolongs life, and it carries additional risks that usually will only add an additional burden of discomfort for dying patients’ ( Finucane,Christmas & Travis, 1999 )

30. Factors affecting poor nutrition
Advanced dementia
Apathy / loss of interest
Fatigue / increased generalised weakness
Depression
Adverse medication side effects
Shortness of breath
Nausea
Anorexia assoc with deteriorating condition

31. Potential reversible causes
Metabolic disorders such as thyroidism
Chronic infections
Alcoholism (nutritional malabsorption)
Oral health factors
Depression
Vitamin deficiencies
Nausea and vomiting
Cultural food issues
Adverse medication side-effects

32. Dehydration
Dehydration in the end-of-life stage has not been found to produce distressing symptoms or shorten lifespan and may in fact be beneficial.
Benefits include:
The production of a natural analgesia-endorphins and dynorphins
Ketoacidosis takes away the feeling of hunger and results in further analgesia
Decrease in urinary output and diminished respiratory secretions

33. Nutrition at End-of-life
The desire to feed stems from the belief that dehydration in a person close to death is distressing
Artificial feeding will not necessarily increase comfort or quality of life during end stage
Dehydration should not be confused with thirst
Thirst is best treated by small amounts of fluid and ice chips offered frequently and good mouth care
The wishes of the resident and their family are paramount
Resident’s best interest and preferences should guide decision making

34. Artificial Hydration
Artificial hydration should be considered in the palliative approach when dehydration results from potentially correctable causes;
Over treatment of diuretics and sedation
Recurrent vomiting
Diarrhoea
hypocalcaemia

35. Adverse effects of fluid accumulation caused by artificial hydration at end-of-life:
Increased urinary output
Increased fluid in GI tract – vomiting
Pulmonary oedema, pneumonia
Increase in respiratory tract secretions
Ascites
All of the above potentially causing more discomfort for the palliative patient.

36. Nausea and vomiting
Nausea is sometimes prolonged and can be less easily controlled than vomiting.
Nausea can occur without vomiting ( the reverse is also true )
It is important to try to identify the cause of nausea or vomiting in order to manage the symptoms.

37. Causes of nausea and vomiting
Latrogenic - medications, chemotherapy, radiotherapy
Metabolic – hypercalcaemia, UTI, altered taste
Organic – constipation, bowel obstruction
Psychological – anxiety, anticipatory
Other – odour from food or wounds
Cause is often unknown at end-of-life

38. Non – pharmacological therapy
Correct reversible causes
Environmental factors – fresh air, absence of offensive smells
Offer non-odourous foods, eat slowly & small amounts frequently
Avoid lying flat before and after meals
Diversional therapies – relaxation
Maintain good mouth care

39. Pharmacological management
General guidelines include:
Determine the most likely cause
Identify contributing factors
Select an appropriate anti-emetic
Select appropriate route for drug administration
Consider possible toxicity
Possible benefit versus potential burden
Ensure patient compliance
Evaluate regularly
Give prophylactically

40. Bowel care in palliation
Bowel symptoms such as constipation or faecal incontinence can have a negative effect on a resident’s quality of life.
Bowel care is a key component of a palliative approach as residents may be taking opioids, which are a major cause of constipation.
Constipation may occur with:
Limitation to fluid intake in faecal waste
Limitation to movement of faeces through colon
Limitation to muscle contraction

41. Bowel management Initial assessment to identify normal bowel habits
Daily documentation of bowel habits
Prophylaxis – essential part of management
Early identification of abnormal bowel habits
Identify cause – diet or drug induced
Prompt and individually tailored treatments
Minimization of interventions that can cause loss of dignity
Comfort for the resident

42. Types of Constipation PRIMARY: Inadequate dietary fibre / dehydration
Reduced mobility / reduced muscle tone
Withholding faecal evacuation
SECONDARY:
Partial bowel obstruction
Spinal cord compression
conditions such as hypercalcaemia
LATROGENIC:
Introduced by administration of drug therapies

43. Symptoms of constipation
Nausea and vomiting
Straining during defecation
Infrequent bowel movements
Feelings of incomplete emptying after bowel movements
Frequent small amounts of diarrhoea
Rectal pain on defecation
Stomach pain, distension or discomfort
Faecal incontinence

44. Pain management
To cure sometimes
To relieve often
To comfort always

45. Defining Pain:
ACUTE PAIN: Is usually due to a definable acute injury or illness. It has a definite onset and it’s duration is limited and predictable. It is accompanied by anxiety and clinical signs of sympathetic overactivity: tachycardia, tachypnoea, hypertension, sweating, pupillary dilatation and pallor. Acute pain may also occur in a patient with chronic pain.
INCIDENT PAIN: Occurs only in certain circumstances eg: movement / procedures

46. CHRONIC PAIN: Results from a chronic pathological process
CHRONIC PAIN: Results from a chronic pathological process. It has a gradual or ill-defined onset, continues unabated and may become progressively more severe. The patient appears depressed and withdrawn and, as there are no signs of sympathetic overactivity, they are frequently labelled as “not looking like someone in pain’. Patients with chronic pain may exhibit depression, lethargy, apathy, anorexia and insomnia.
Chronic pain requires REGULAR use of analgesics to control pain with breakthrough analgesia for additional acute episodes.

47. As noted by Lord Devlin in R v Adams (Bodkin) (1957) even though direct killing is unlawful: ….. There is still much for a doctor to do that he is entitled to do all that is proper and necessary to relieve pain and suffering, even if the measures he takes may incidentally shorten life.
Criminal law requires intent. The intent to relieve pain is different from the intent to kill, which does and should lead to criminal charges.

48. Pain management requires a systemic and holistic approach to treatment that is tailored to the individual’s physical, psychological and spiritual needs.
As Dickinson stated,
“ Pain is a subjective sensation and therefore pain is what the individual says it is and NOT what others think it should be”.
Recognition of an emotional and psychological component to pain points to the need for a multidimensional assessment for effective pain management.

49. Principle of pain management
Regular around the clock
Oral medication if possible
Adjuvants for side effects

51. Barriers to effective pain management:
Some include:
Lack of knowledge of pain assessment among some nurses and doctors.
Overcoming cultural beliefs. Eg: a recent study found some indigenous Australian communities feared morphine was given at the end of life to ‘get rid of me” (them).
A belief that pain relief should only be given if pain was currently present.
Poor communication.

52. Pain assessment tools:
Pain assessment tools have been developed to attempt to overcome the incongruence between nurses perception of pain and the patient’s.
Some assessment tools used are:
The ABBEY pain Scale.
The FUNCTIONAL Pain scale. (FPS)
The NUMERICAL Rating Scale. (NRS)
The McGILL Pain Questionnaire (MPQ)
The BRIEF Pain Inventory (BPI).

53. Complementary therapies
In 1995 RNSH (Sydney) analysed 319 patient questionnaires where the question was asked “Why do you use alternative treatments” Reasons given include:
New source of hope.
Preference of natural therapies.
Impression of non-toxic therapy.
Supportive alternative practitioner.
Greater personal involvement.
It is important therefore to endorse the patient’s desire and choice of empowerment.

54. Some complementary therapies include:
Counselling
Massage /relaxation techniques
Aromatherapy
Naturopathy
Therapeutic touch /Reiki /Reflexology
Herbal / traditional Chinese medicines
Creative visualisation
Music therapy
Meditation /hypnotherapy
Acupressure / acupuncture

55. It is necessary to recognise the importance of offering patients the choice of a range of therapies BUT
If nurses are to incorporate complementary therapies into nursing practise, certain issues need to be addressed including:
Training
Staffing levels
Time
Informed consent
Documentation
Given the above it is important that management supports the use of complementary therapies.

56. Physiological changes
In the final stage when life-sustaining systems begin to shut down, physical, mental, emotional and spiritual changes may occur over weeks, days or hours. These can include:
Increased weakness, fatigue. Loss of interest in everyday things. Decreased appetite and fluid intake. Difficulty swallowing. Neurological dysfunction, confusion. Pain. Incontinence. Restlessness. Increased sleepiness. Changes in body temperature and colour. Loss of ability to close eyes. Breathing difficulties.

57. Nursing care
As the dying persons physical changes occur so will their nursing care needs.
These needs include:
Hygiene
Incontinence care
Pressure area care
Oral and eye care
Bowel care
Pain / comfort management
Care of respiratory difficulty
Psychological and spiritual care

58. Unexpected Alertness and Energy
Often a day or two or even a few hours before death, the person may have a surge of energy, wake up, become alert, can sometimes eat or drink or talk and spend some quality time with loved ones.
This can be a very precious time that doesn’t often last long.
Nurses will often refer to it as “ the calm before the storm”
Reliving this time is common following the passing of the person by those left behind and can be very comforting.

59. Signs of Impending Death
Increased anxiety, restlessness, confusion
Loss of interest in daily activities
Loss of interest in eating and drinking
Lethargy
Gradual cooling of skin, becomes pale, grey or bluish in colour
The person becomes less responsive and eventually unresponsive
Abnormal breathing pattern, known as Cheyne-stokes
Fast weak pulse
Shutdown of circulation to the extremities, with the development of cyanosis

60. Signs of Clinical Death
These include:
Absent heartbeat and respirations
Pupils fixed
Colour turns to waxen pallor as blood settles
Body temperature drops
Muscles (sphincter) relax, often causing incontinence
Eyes may remain open
Jaw falls open
The focus of care then shifts to those grieving.

61. Care after Death A Medical Officer or RN will confirm death
Respect the person in death as in life
The person’s after death wishes are followed
Personal hygiene is completed with the same care and attention as if the person was still alive, using standard precautions and safe manual handling
If a Coroner’s case is suspected then the body is not to be washed, dressings, cannulae and catheters are not to removed.
Give support to the family and friends

62. Loss and Grief
During the palliative phase and following the death of a person those involved will experience various degrees of loss and grief.
The people involved will include the dying person , their loved ones and the staff. The staff effected can be varied.
To understand how we may assist them and ourselves we must first understand the effects that loss and grief have on the human body.

63. LOSS: Loss can be actual, or perceived or permanent, and it occurs when someone or something can no longer be seen, heard, known, felt or experienced.
GRIEF: Grief is the natural response to loss. It includes a range of responses: physical, mental, emotional and spiritual. These are usually associated with unhappiness, anger, guilt, pain and longing for the lost person or thing.
Each person will grieve and recover in their own way.

64. NORMAL GRIEF REACTIONS:
EMOTIONAL MENTAL
Anxiety Disbelief
Fear Confusion
Sadness Preoccupation
Anger Sense of presence
Guilt Hallucinations
Inadequacy
Relief
Loneliness

65. PHYSICAL REACTIONS TO GRIEF:
Hollowness in the stomach.
Tightness in the chest and throat.
Over sensitive to noise.
A sense of depersonalisation.
Breathlessness.
Muscle weakness.
Lack of energy.
Dry mouth.

66. STAGES OF GRIEVING:
Denial and isolation.
Anger and resentment.
Bargaining Depression.
Acceptance.
Factors that can influence the reaction to grief are:
Stage of growth and development.
Cultural and spiritual beliefs.
Socioeconomical status.
Relationships with significant others.

67. Strategies for assisting a person to deal with loss and grief.
Reflective listening.
Provide appropriate environment.
Accommodate the individuals needs eg: Pets, music, Exercise, Reminiscence.
Use of experts; clergy, grief counsellors.
Accommodate cultural and religious customs.
Support and encourage loved ones participation in patient care if requested.

68. Characteristics a nurse requires
Caring and understanding
To be able to accept others beliefs and customs (even when not your own)
Empathic approach
To take a risk and get involves (not afraid of intense feelings)
To be able to acknowledge loss
To support as a person moves through the stages of grieving
To work with and support colleagues

69. How to cope ?
Working within a team that ensures the well being of it’s members is a vital component to providing holistic palliative care.
Past personal and professional experiences of staff will greatly influence how they cope in different situations.
Staff need to be encouraged to use resources available to them when needed.
Communicate and ‘look out’ for your colleagues and together you can make a difference.

70. When a patient dies, you are entitled to grieve.
How you reconcile your personal feelings of loss with your sense of professionalism is important as unresolved grief will wear you down.
It is only human to hurt, to grieve when a person who has influenced you in some way has died.
Supporting a patient and their loved ones in the final moments of life is a privilege and comes with personal rewards.
‘No one ever complained that someone cried; but they have that no one cared’ – workcover NSW.

71. References www.who.com/palliativecare
TAFE NSW.2006, Aged Care in Australia a guide for aged care workers. Southwood Press