Ms.

Abeer Jebril 2010 2011

introduction

Welcome to this unit ,This unit provides you as an Adult Nursing student with an opportunity to enhance your knowledge and skills in relation to providing high quality care for people with advanced progressive disease and those who matter to them.

Demonstrate an understanding of the concept and philosophy of palliative care . Demonstrate an understanding of the psychosocial and spiritual needs of patients and those who matter to them . Demonstrate an understanding of multi-cultural aspects of death and dying in planning care . Reflect upon attitudes to death and dying prevalent in modern society and the implications for the care provided .

Appraise the concept of loss and bereavement interventions to facilitate grief . Analyses the principles of symptom management in patients with advanced, progressive disease . . Support and empower patients and their families to participate in decisions concerning their care Demonstrate awareness of bereavement services which provide equity of access for a variety of user groups . Discuss the care required for the management of a range of symptoms .

 Demonstrate

awareness of the need for support systems available for self, colleagues and other professionals involved in the delivery of holistic palliative care .

Week One: Principles of Palliative Care Discussion about services providing care for the dying with which Week two : Impact of an Advanced Progressive Disease Case study discussion .

Week three: Care in the Last Days of Life caring in last day of life Discussion about caring for dying patients, a 'good death' and the quality of care provide. Week four: Symptom Management in Palliative Care Discussion based on past experience about care of dying people What symptoms did they have ? How were these symptoms managed ? Were they managed successfully or not ? What could you do now ?

The term hospice it come from hospitality can be traced back to medieval times when it referred to a place of shelter and rest for weary or ill travelers on a long journey. The name was first applied to specialized care for dying patients in 1967 by physician Dame Cicely Saunders, she is founded the first modern hospice. Christophers Hospicein a residential suburb of London. Saunders introduced the idea of specialized care for the dying to the United States during a 1963 visit with Yale University. Her lecture, given to medical students, nurses, social workers, and chaplains about the concept of holistic hospice care, included photos of terminally ill cancer patients and their families, showing the dramatic differences before and after the symptom control care. This lecture launched the following chain of events, which resulted in the development of hospice care as we know it today.

A number of different stages can be identified within this general area: Supportive Care

Palliative Care
End-of-Life Care

Life prolongation Maintaining function

Comfort

defined by National Institute for Health and Clinical Excellence (NICE, 2004) as : an umbrella term for all the services, generalist and specialist that may be required to support people with cancer and their carers. While this definition is in relation to care of people with cancer, it can also be adapted for other patient groups

is defined as National Council for Hospice and Specialist Palliative Care Services (NCHSPCS) , 'the active holistic care of patients with advanced, progressive illness. Management of pain and other symptoms and provision of psychological, social and spiritual support is paramount. The goal of palliative care is achievement of the best quality of life for patients and their families '.

is a period of time during which a person's condition is actively deteriorating and when death is expected (Northern Ireland Cancer Network (NICaN), 2007).

Continuum of Care

Curative Treatment

Bereavement Care Hospice

Palliative Treatment

Diagnosis

Death

Supportive care provide all the services and care that will help the patient and family move through this difficult period of life with the maximum possible wellbeing.

It good allocation of in put to promote optimal care. Supportive care is care on a continuum which includes palliative and end-of-life care.

Valuing Connecting Empowering Doing For Finding Meaning Preserving Integrity

Affirms life and regards dying as a normal process . Provides relief from pain and other symptoms . 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 patient's illness and in their own bereavement( . (National Council for Hospice and Specialist Palliative Care Services (NCHSPCS), 2004)

The key principles of palliative care have been identified as :

Focus on quality of life which includes good symptom control/management . Whole person approach taking into account the person's past life experience and current situation . Respect for patient autonomy and choice (e.g. treatment options and choice ( Emphasis on open and sensitive communication which extends to patients,

An active and compassionate approach to care - respect and dignity of patient/family . Partnership in care - patient/family and health and social care professionals . Regular and systematic assessment of patient carer needs consent at all times . Anticipation and management of deterioration . Advance care planning . Patient choice about place of care and death . Sensitivity to personal, cultural and spiritual beliefs and practices . Effective co-ordination of care across all teams and providers (statutory/voluntary and independent) who are involved with patient/family .

One :The palliative care approach embraced in all aspects of health and social care . Level Two :General palliative care, for those with low to moderate complexity, delivered at home, hospital, nursing homes and some hospices . Level Three :Specialist palliative care for those with more complex needs. Delivered by an accredited, trained and experienced multi-professional team.
Level

share a common task..the reason a multidisciplinary team is involved is that the presenting condition results in a complex clinical situation which requires expert knowledge and skills from more than one discipline ". In a multidisciplinary team: Professional agendas may come first . Team goals second . Team members may work towards uniprofessional goals.

"professionals from different disciplines who

Is synergistic . Is more likely to be effective as the individuals function as equals, with respect for the skills and knowledge brought by each . Is able to overcome professional boundaries, status and the issue of power Brings together individuals with a diversity of training to share the goal of improving the quality of life of the patient Many unit have different function with sequential task

Decision-making :means selecting a course of action to solve a specific problem Within palliative care, it should be based on the four ethical principles of: Autonomy Beneficence Non-maleficence Justice In inter-disciplinary team decision-making, it is important to consider: Who has the information necessary to make the decision ? Who needs to be consulted before the decision is made ? Who needs to be informed of the decision after it is made ?

 Discuss

the impact of advanced progressive disease on patients and their families . Discuss the importance of support and education of the family care-givers . Discuss the importance of communication in palliative care . Consider the use of complementary therapies in palliative care .

Coping has been described by Lazarus (1993) as: a primary mechanism to adapt to illness, which neutralises the threatening situation effectively.

Their illness poses a threat to all aspects of their life including: Life and Future Plans Physical and Psychosocial Independence Body Image and Sexuality Relationships Social Role and Status Faith and Hope

Stages of Adjustment (Kubler Ross, 1970) Kubler Ross proposed a model of five stages that people who are dying move through. They are: Denial Anger Bargaining Depression Acceptance

 Another

model that has been proposed is that by Buckman (1998) which includes three stages: Facing the Threat Being ill Acceptance

 Corr

suggested that the focus during this stage of life was on the tasks to be completed: Physical Tasks Psychological Tasks Social Tasks Spiritual Tasks

Total pain When a physician discloses the diagnosis of a life-threatening illness, the door of awareness is jarred open for the patient. The usual habit of allowing thoughts of death to remain in the background is now thought impossible. Death can no longer be denied..... The existential slap occurs when the reality and inevitability of one's own personal death sinks in. )Coyle, 2004(

 The

concept of total pain recognizes that there are physical, psychological, spiritual and social components to the pain and distress that the patient who is dying experiences

Accurate holistic assessment is essential to provide high quality care and you have already developed many of the skills required for this. Some of the questions you need answers to are : How is this person feeling ? What aspects of identity are threatened ? What professional and informal support do they have ? Are they where they want to be ?

It is also important to assess their mental status. Anxiety and depression are both common mood disorders in patients receiving palliative care, and both will influence pain perception. Patients who are depressed may also have symptoms that are difficult to palliate and that improve as their depression is treated, however, up to 80% of the psychological and psychiatric morbidity that develops in patients with cancer goes unrecognised and untreated ,It is important to distinguish between depression and natural sadness through using recognised criteria. Accurate diagnosis and treatment are essential .

 In

providing care to those with advanced progressive disease. knowledge of bereavement theories can help you to understand those suffering loss. skills in active listening and empathy that you have developed in earlier units

 Of

all human experiences, death imposes the most painful and far-reaching adjustment for families .

)Walsh and McGoldrick, 1998(

and carers usually have: Joys and regrets of the past Demands of the present Fears of the future
Families

 Kristjanson

and Ashcroft (1994) identified four major dimensions in the Family's Cancer Journey: Developmental stage of the family Cancer illness trajectory Family responses to cancer Healthcare providers behaviour

 Research

by Stajduhar and Davies (1998) suggested that family care-givers have unmet needs and are prone to physical, social and emotional effects

 Providing

chores . Assisting with personal care . Sometimes, quite complex nursing care . Management of symptom control

companionship and undertaking household

 Assessment

of need needs to take into account many aspects of their situation including : The domain of family care needs to include respite care and out of hours care . Relatives' stress and related factors . Coping strategies used by the families . The need to identify caregivers at risk of bereavement maladjustment All this information will be used in the planning

Supporting the Family Care-Giver

The need for excellent communication with the family is paramount. Specific aspects that need attention are: The need for involvement in decision-making. Appropriate timing and amount of information. The need for professional crisis intervention. The need to demonstrate empathy for family emotions and relationships. The need to measure patient and family care

satisfaction

is to prevent unnecessary and unwanted admissions to hospital or hospice The involvement of a specialist palliative care team can ensure that families are provided with the information and support they need to be able to continue to care for the patient through their illness trajectory The family are exposed to the difficulties and symptoms experienced by the patient and want to be able to ameliorate his/her distress. A family which has succeeded in providing care for their relative to enable them to die at home can feel a considerable sense of satisfaction and it is the role of the nurse to support them to achieve that end

Optimism in the care-giver, pre-bereavement depressive symptoms and social support were involved in determining the presence of depression after bereavement. A study by Scott (2001) found that insufficient preparation for the role of care-giver contributed to negative mental health effects.

Development of a good trusting relationship with the family members and providing the necessary support and the education needed for them to carry out their role effectively are essential

 The

need for involvement in decisionmaking Appropriate timing and amount of information The need for professional crisis intervention The need to demonstrate empathy for family emotions and relationships The need to measure patient and family care satisfaction

It is not uncommon for the relatives to try to involve the healthcare team in collusion to keep the patient ignorant of their prognosis. This is generally an act of love or a need to protect the patient from pain. They may say

It would kill him - I don't want you to tell him."

 It

is important to remember that although the family's feelings have validity, the patient has primacy

This situation can be avoided if patients are consulted first about their diagnosis, before their relatives are told. If this has not happened, you will need to discuss the consequences of not telling. It is also important to gain the relatives' trust and to assess their : Understanding of the disease . Reasons for not telling the patient . Understanding of what the patient knows . Establish ground rules with the family that you cannot lie to the family or the patient.

There are a number of communication issues which arise in this context: Breaking bad news Dealing with difficult questions . Dealing with collusion Communicating with the patient who is : Angry Withdrawn/ depressed In denial Breaking Bad News

(Kendrick and Weir, 1996( The Northern Ireland Regional Guidelines for Breaking Bad News (DHSSPS, 2003) are the following: Prepare yourself Prepare your setting Prepare your patient Provide information Provide support Provide a plan Follow-up after the interview

'How long have I got '?

Acknowledge that this is a difficult area, with a great deal of uncertainty . Avoid giving dates .

Are there future events that the patient is worried he/she will miss ? Can realistic goals be set? In principle, the truth is the only answer .

How honest does the patient want you to be? Some patients do not want to know everything Too much information may provoke as much anxiety as too little ".

In relation to breaking bad news, this sentence may help you to remember the principles (Please Know How Information Affects Patient(

P - Prepare K - What does the patient know ? H - How much does the patient want to know ? I - Share the information A - Acknowledge the patients' feelings P - Future plan

Break bad news badly and you will never be forgotten . Being honest gives a tremendous blow.but such news if offered gently with a velvet glove is easier to take than the devastation of trust and honest which lying and deceit mean.

 People

with Learning Disabilities affected by cancer often have many concerns and questions, but are often denied opportunities to express these and receive support :

There is often a delay in giving a diagnosis . They are excluded from health care decisions . They are often not told the truth about their diagnosis

People with Dementia They ask the same question repeatedly within a short space of time.

Giving information over and over again, as if continually breaking bad news, exposes the patient repeatedly to the sense of loss and grief associated with bad news A patient may appear withdrawn for various reasons and this needs to be acknowledged.

The patient may be: Deaf . Distracted by a confusional state . Distracted by pain or other symptoms . Unable to talk due to disease/cultural/language . Depressed or experiencing shame or guilt . Drowsy due to medication . Too exhausted to talk . Protecting relatives and afraid to talk .

 Assess

and treat clinical depression and any other reversible causes of withdrawal . Explore collusion, guilt, shame, anxiety . Explore all other means of communication where appropriate and necessary .

 'touch

therapies' (massage, aromatherapy and reflexology) psychological interventions (relaxation, meditation and visualization) being the most usual.

The Angry Patient Anger is usually a symptom for which there is an underlying cause. It may be helpful to enable the patient to express the emotion through using open questions and acknowledging the distress.

Denial Denial may be a valid coping mechanism. It can be identified with the response to the question, "Are there times when you think that you might not get better?" Denial is rarely complete and the level of denial may change over time. Most patients will move towards reality and give indications of when they are ready to talk in time

Principles of Management (NCPC, 2006)

Recognizing that death is approaching. Participation by patient, family and friends. Collaborative multi-professional approach. Assessment of patient's needs. Treatment of patient's symptoms. Assessment of relatives' needs. Psychosocial support.

Potential signs of death:

Profound weakness: becomes bed-bound and needs assistance with care . A gaunt physical appearance . Drowsiness/disorientation/difficulty in concentration . Reduced intake of food and fluids . Difficulty swallowing medication.

We should recognize: The importance of retaining an intact self . Patients value system . Patients own personality . Patients social world.

 Advance

Directives :This is a formal written advanced statement by a patient refusing treatment in specific stated situations that may occur in a future illness . and Nutrition :Do you or do you not commence IV fluids when the patient can no longer take food and fluids by mouth ? or Allow Natural Death :At what stage should it be agreed that CPR is not appropriate ?

Hydration

CPR

aims of care at the end-of-life are to : Ensure patient's comfort physically, emotionally and spiritually . Make the end of life peaceful and dignified . By care and support given to the dying patient and their careers, make the memory of the dying process as positive as possible .
The

Current medications are assessed, non-essentials such as antibiotics, anti-hypertensives, hormone treatments are discontinued . As required, subcutaneous medication is prescribed according to an agreed protocol . Decisions are taken to discontinue inappropriate interventions such as taking vital signs . . The insights of the patient, family and carers into the patient's condition are identified .

 Religious

and spiritual needs of the patient, family and carers are assessed . Means of informing the family and carers of the patient's impending death are identified . The family and carers are given appropriate written information . A plan of care is explained and discussed with the patient, family and carers

The opportunity is taken to learn from the experience and improve care given to other patients. Was all suffering relieved and if not, what more could have been done ? Was the patient given every opportunity to express their feelings and fears and were they addressed appropriately ? Was death peaceful and dignified in all respects ? Was everything possible done to support and care for the relatives ? Where could the care have been better ? How does each member of the care team feel ? What lessons have been learned that might lead to better care for others( ?Furst and Doyle, 2004 )

Nauck et al. (2000) examined the frequency of symptoms in the last three days of life in a sample of 150 patients and found the following : Drowsiness and Confusion - 55% Death Rattle/ Moist Respirations - 45% Restlessness and Agitation - 43% Pain - 26% Dyspnoea - 25% Nausea and Vomiting - 14%

 in

reaching the choice of management approach for any symptom, the following should be met It: must be the preferred choice of the patient. There must be open communication between patient, family and healthcare professionals to facilitate informed decision-making. The patient's own story must be listened

 While

the use of evidence-based interventions is a part of symptom management, fostering of hope and treating patients as worthwhile individuals is equally. An accurate, detailed assessment is key to effective symptom management

mnemonic EEMMA will help you to remember the key points in managing symptoms (Reid and McCormack, 2005( E = Evaluation E = Explanation M = Management M = Monitoring A = Attention to detail

 The

patient's own evaluation of the symptom is acquired through taking a history including any changes. Symptoms can be considered in three broad categories: Due to the symptom itself . Due to the treatment . Due to concurrent medical conditions

 Clear

explanation about the options which are available in relation to care and treatment ensures that the patient is fully involved as an equal partner in care.

 Building

on the initial evaluation you need to work with the patient to identify the priorities and set realistic goals to be achieved. takes into account the individual patient's needs.

 This

aims to determine the efficacy of management of the symptom and will also ensure regular reassessment of the severity of the symptom and effect on the patient. It will permit rapid implementation of plan B if the first intervention is not effective

Attention to detail to ensure that all aspects of care are managed effectively is essential. Lack of accurate information through not asking the right questions or listening carefully to the answers can result in ineffective symptom management

Restlessness/Agitation may have multiple etiology and you need to consider all possible causes which may include : A full bladder or rectum . Uncontrolled pain . Cerebral metastases . Anxiety, fear/distress, unfinished business . Steroids . Drug or alcohol withdrawal .

*The basic care for patient and family provided in this situation will include : Reassurance of patient, family and friends . Making the environment comfortable with, for example, music, good lighting, spiritual help, massage . Ensuring patient safety . Providing privacy . Drugs such as Benzodiazepines or Phenothiazines may be prescribed to calm the patient.

 noisy

"bubbly" breathing can be manage

by careful patient positioning. gentle physiotherapy. gentle oropharyngeal suction. Administration of prescribed hyoscine will dry up the secretions. Family and friends must be reassured that the patient is not in pain or distress.

 The

way a person sees himself or herself and perceives how he or she is seen by others" (Salter, 1997 ( Body image consists of subjective and perceptual experiences and contributes to how an individual feels about self, processes information and behaves" (ShearsmithFarthing, 2001).

 Body

1998: Body Reality :The body how it is: the objective representation of the body . Body Ideal :How we believe our body should look and perform . Body Presentation :How we present ourselves to others in a social context .

image has three dimensions (Price,

 The

patient's ability to cope with changes in body sensations or appearance has been exhausted . Others behave towards the patient in ways which make him/her feel inadequate, unwelcome and unloved (Cook, 1999)

.
Visible

abnormalities e.g. birthmarks, acne, arthritis, amputation . Concealed disturbances such as diabetes mellitus, deafness, burns, self-harm . Psychological disorders e.g. anorexia, schizophrenia . Physiological disorders e.g. cancer, STIs . Surgery e.g. stoma, hysterectomy, disfiguring surgery for cancer .

Self-image and self-esteem will alter as the body deteriorates resulting in impaired sexual function Sexuality and palliative care are both frequently seen as taboo subjects and here they are combined

Sexuality can be affected by a range of situations which make the person feel unwell or unable to cope

pain surgery radiotherapy or chemotherapy hormone therapy depression or anxiety fatigue nausea skin rash

multidisciplinary review may be helpful in moving forward with this patient. Approaches that may be helpful include: Providing an opportunity to express body image concerns . Research supports the use of touch, for example, aromatherapy and massage Anxiety management . Counseling and emotional support . Goal setting . Using practical techniques to manage the effects of treatment/disease . Encouraging a social support network .

Fatigue has been defined as: A total body feeling ranging from tiredness to exhaustion creating an unrelenting overall condition which interferes with an individual's ability to function to their normal capacity .

Resting or sleeping do not alleviate the fatigue

patients described that fatigue was a 'diffuse inexpressible experience with no obvious cause' but its increasing severity was also the way they knew they were dying (Corner, 2004(

Breathlessness is a poor prognostic indicator which occurs in 70% of people in the last six weeks of life (Waller and Caroline, 2000). The impact of breathlessness is made worse by psychological factors and anxiety/depression There is an imbalance between the need for oxygen and the amount received. The patient is conscious of the need to breath and this itself can give rise to anxiety which results in increased muscle tension and a higher respiratory rate, increasing the perceived breathlessness.

Cause of breathlessness lung cancer Chronic Obstructive Pulmonary Disease, to a chest infection or pleural effusion which require immediate treatment. use a holistic approach to the management of breathlessness Very importance of communication using a wide range of techniques both pharmacological and no-pharmacological . Psychological interventions, including education to help the patient to implement coping strategies such as breathing re-training

Reduce Anxiety :The importance of reducing anxiety is central to reducing oxygen demand Reduce Oxygen Need :Minimizing effort needed for activities Fresh Air and Fans :Being by an open window may help patients and a fan positioned to blow on the patient's Positioning :Sitting upright supported or leaning slightly forward resting on a table may help. Oxygen Physiotherapy :Good positioning for breathing and respiratory muscle training can be of benefit Aromatherapy :This may also aid breathing but must be carried out by a qualified person as appropriate oils must be selected that will not make breathing more difficult . Occupational Therapy :Simple adaptations that help the patient with activities of living will minimize the burden. .

A number of drugs may make breathing more comfortable for the patient during the last stages of life and should be tried to find the best possible combination. These include: Bronchodilators Steroids :Can be helpful particularly for patients with COPD . Cannabinoids :in low doses Opioids Other drugs for depression or anxiety or to produce sedation may be used with breathless patients, but should be used with caution and with a clear understanding of the possible outcomes

Lung cancer: 50-80% of those with advanced disease . Neurodegenerative disorders: Resulting from immobility, aspiration, poor cough reflex, progressive weakness of respiratory muscles . Causation may be multifactorial thus increasing the difficulty of achieving symptomatic relief. These causes can include:

Side effects of drug therapy (e.g. ACE-Inhibitors ( Pooling of secretions in the pharynx in those with neurodegenerative disorders (particularly problematic at night( A malignant tumor in the respiratory tract . respiratory disease such as infection (acute/chronic), asthma

cough :To enable the patient to cough easily to clear the mucus . Dry cough :To suppress the cough . .
Wet

Wet Cough : Use of nebuliser with saline can make sticky secretions easier to cough up . Antibiotics may be used to decrease the amount of secretions in a patient with pneumonia . Bronchodilators will help in an asthmatic patient . Mucolytics reduce viscosity of the sputum and make it easier to expectorate . Dry Cough : Nebulised saline may be helpful in reducing the irritation of dry airways . Antitussive drugs which inhibit the cough reflex from the brain-stem. These include opioids . Nebulised local anaesthetics can be used with care, and are followed by at least one hour of nil-by-mouth as pharyngeal anaesthesia may occur. This is only advised with specialist palliative care input and the first dose should be given within an in-patient/out-patient setting in case of reflex bronchospasm The efficacy of the management needs to be regularly assessed both during the day and at night so that treatment can be modified as

Patients with advanced cancer are reported to have nausea (60%) and vomiting (30%) These are normally protective mechanisms but in advanced disease, they may have no beneficial effects and may occur for a number of reasons: Chemical imbalances due to drugs (e.g. opioids) and metabolic imbalances. Gastrointestinal problems such as constipation. Enlargement of the liver or abdomen. Cerebral tumors. Anxiety.

Assessment should include accurate recording of characteristics of the vomit: Amount Colour Odour Presence of blood, undigested food, faecal fluid Associated with nausea Whether it relieves nausea

Constipation can caused by : The patient may have a tumour blocking the gut. The patient may have metastases in the spinal cord which block the normal nervous control of defecation. The patient may be very weak from their illness and unable to strain to open their bowels. The patient may be unable to eat and/or drink properly thus having inadequate bulk in the rectum to initiate defecation. Lack of exercise will result in reduced stimulus to defecate. Many of the drugs used in pain management have a constipating effect by suppressing peristalsis.

Interventions fall into two categories: pharmacological and non-pharmacological

 Maintain

dignity and privacy and allow time when going to the toilet . Adequate fluid intake . Accurate recordings of stool consistency and ease of defecation . Increase fibre intake using fruit cocktails etc . Make food as attractive as possible . Exercise within the patient's abilities

involve the selection of the appropriate aperients/laxatives for the individual patient. With these patients, they should be taken on a regular basis and titrated to find the necessary dose. Surface-wetting agents :Increase water penetration into the stool and therefore lead to softening. Inadequate when used alone . Contact stimulant agents :Act on the bowel to induce peristalsis e.g. bisacodyl, senna, dantron . Bulk-forming agents :Provide fibre and need to be taken with water. Used infrequently in palliative care . Osmotic laxatives :Exerts osmotic effect in small bowel and draws water into bowel which is retained in the stool. Combination surface-wetting and contact stimulant : Used in most hospices and results in comfortable stool

A small enema of arachis oil may be needed to soften the stool (check for nut allergy before use arachis oil is the same as peanut oil). A small phosphate enema may be used the following morning to initiate a bowel movement. Manual evacuation of faeces is the final intervention that can be used to clear impacted faeces, but should be done under sedation by an experienced practitioner