PALLIATIVE CARE

A.I.N. TRAINING REVIEW OF AIN PALLIATIVE CARE WORKSHOP HELD 24 NOVEMBER 2010

DEFINITION WORLD HEALTH ORGANISATION (WHO)

Palliative care is 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. (WHO, 2010).

DEFINITION WORLD HEALTH ORGANISATION (WHO)

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; (WHO, 2010)

Palliative care is active therapy

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. (WHO, 2010)

Palliative care IS NOT terminal care

Terminal care is a negative term and should be

avoided. Indicates that all hope is lost

Good symptom control has to be the basis on which patients with advanced disease can feel secure that the team involved in their care are still actively interested in their well-being despite progressive disability and ill health.
(Hockley, 1996)

Contemporary palliative care

Is practiced wherever the patient or resident is

located

Ward in a teaching/public hospital Palliative care unit/hospice Hostel Nursing home Home

A palliative approach
Careful attention to the following characteristics will assist the aged care team in taking a palliative approach to resident care: being available to discuss issues with the individual and family members; providing information in a proactive way; and having a sense of partnership with people and their families
(Edith Cowan University, 2005)

(Judd, 2010)

Symptoms that are considered to indicate final phase of life:

Requiring frequent intervention Being bed-bound Loss of appetite Profound weakness Trouble swallowing Dry mouth Weight loss Becoming semi-conscious, with lapses into unconsciousness Experiencing day-to-day deterioration that is not reversible (Addington-Hall, MacDonald, & Anderson, 1990)

Deterioration
Consider the principle
Monthly Weekly

deterioration = months to live

deterioration = weeks to live

Daily

deterioration = days to live

Dyspnoea
Breathlessness is a source of distress for many patients requiring palliative care. The causes for breathless are complex and it is a distressing symptom for the patient and their family (Edith Cowan University, 2005). Recent study into the efficacy of morphine on the reduction of dyspnoea showed that low does of morphine DID help to relieve symptoms of dyspnoea

(Abernethy et al., 2003)

Dyspnoea
Families and professional caregivers frequently find

changes in breathing patterns to be one of the most distressing signs of impending death explain to families what to expect Relieve intolerable symptoms use repositioning etc Use anticholinergic drugs these will help to dry mucous membranes and relieve dyspnoea SUCTION IS NOT recommended and causes more distress to the patient, often increasing oral fluid production BUSCOPAN does not cross blood-brain barrier and helps to dry mucosal membranes

Noisy Respirations
Changes in a dying patient's breathing pattern may be

indicative of significant neurologic compromise. Breaths may become very shallow and frequent with a diminishing tidal volume. Periods of apnea and/or Cheyne-Stokes pattern respirations may develop. (Cheyne-Stokes is a disorder characterised by recurrent central apneas during sleep, alternating with a crescendo-decrescendo pattern of tidal volume.) Accessory respiratory muscle use may also become prominent. A few (or many) last reflex breaths may signal death.
(Emanuel, Ferris, von Gunten, & Von Roenn, 2010)

Pain management
Continuous pain in the semiconscious or obtunded

patient may be associated with grimacing and continuous facial tension, particularly across the forehead and between the eyebrows. Pain must also be considered when physiologic signs occur, such as transitory tachycardia that may signal distress. DO NOT over diagnose pain when fleeting forehead tension comes and goes with movement or mental activity (eg, dreams or hallucinations). DO NOT confuse pain with the restlessness, agitation, moaning, and groaning that accompany terminal delirium.
(Emanuel, Ferris, von Gunten, & Von Roenn, 2010)

Urinary dysfunction
Incontinence/retention

Loss of dignity
Family distress Increased burden on staff/carers

Agitation/restlessness
Act early to manage Consider IDC

Maintain skin care

Bowel dysfunction
Manage constipation/diarrhoea

Prevention
Rectal examination Rectal laxatives

Patient comfort
Skin care

Hydration
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

respiratory tract secretions Ascites

( Palliative Care Australia Incorporated, 2010)

Nutrition
The provision of artificial nutrition and hydration may be

detrimental to the dying person

The desire to feed stems from the belief that dehydration in

a person close to death is distressing Thirst or dry mouth in residents who are at end-of-life may frequently be caused by medication, mouth breathing or oral thrush. In such cases artificial hydration is unlikely to alleviate this symptom. ( Palliative Care Australia Incorporated, 2010)

Terminal restlessness
The following are examples of questions to ask:

Is there anything physically interfering with the patient's comfort? Does the patient have pain that is not being well-managed? Observing outward facial expressions and body posture are important to evaluate. If the patient has a urinary catheter, is it "patent" (meaning open) and is urine flowing freely through it? If it is plugged, that could cause extreme pain from pressure in the bladder. Is the patient having regular bowel movements? When was the last bowel movement and what consistency did it have? Could the patient be impacted (blocked)? Is there some other sudden change in function that may be causing distress to the patient? Is there an infection causing the agitation? Is the infection an expected effect of the disease, such as brain cancer? Is the patient going through obvious psychological and emotional distress? Has a counsellor or minister's services been offered to the patient and family? Is the restlessness purely psychological or is it metabolically based? Has a new medication been added? Has a medication dosage been recently increased or decreased? Is this a side-effect from a medication? Has the patient entered the pre-active phase of dying? (Hospice Patients Alliance: Consumer Advocacy, 2010)

Terminal restlessness - treatment

Relieve precipitating factors where possible

Sedation
Clonazepam drops help to ease fear/anxiety Sedation

Relief of causative factors, where possible

(positioning, etc)

Nursing care
Eye care

Mouth care
Skin care Involve the residents family, if they wish, in care

Care of the residents family

Communicate and explain at all times

Encourage familial involvement

Common areas of family concern Should we stay? Will it be long? Are they suffering? What will happen? Why has their breathing or skin colour changed? Why are they still receiving treatment with morphine/syringe driver?

Staff can assist families by

Accepting the situation and understanding that you

CAN NOT change what is happening Accepting that you can not give the family what they may need most of all Assist family with resilience and provide resources Communicate clearly and simply, use correct terminology Accept own helplessness

After death
Allow family time to say goodbye

Encourage viewing of the body

Respect religious and cultural beliefs

Death and dying is sacred

Responses depend on: Cultural practices Customs Beliefs/philosophies/religion Values meanings

Managing the impact of death upon self

Know your own limitations

Accept that you may grieve

Kow how to get support Focus on what has been achieved, not on what has

not Staff meetings and support

FOOD AND FLUIDS

 Appetite affected by:

Nausea Pain Food changes (taste) Medication

Cahexia
Poor state of being

Weakness
Emaciation Pain

Usually associated with TB or cancer

Cancer
High metabolic rate

Food consumption cannot match

Food feeds cancer Only let resident eat what they desire, do not push

foods

 Spray bottle of water to help relieve dry mouth

Peppermint water helps to stimulate saliva

production Flavoured or plain ice cubes/syringes/gels to keep mouth moist

GOALS
Comfort may be more appropriate than pushing food

Dietician need holistic diet

Maintain oral health - minimise thrush Small snacks/eating with companions

Lip care

ORAL CARE IN PATIENTS AT THE END OF LIFE

BOWEL CARE

Constipation
Constipation is a common problem for palliative care patients and can generate considerable suffering for patients due to both the unpleasant physical symptoms and psychological preoccupations that can arise. There is uncertainty about best management of constipation in palliative care patients and variation in practice between palliative care settings.
(Miles, Fellowes, Goodman, & Wilkinson, 2009)

 Constipation can best be defined as the passage of hard, dry stools

less frequently than the patient's usual bowel-habit pattern, rather than the number of stools per day or week. Constipation tends to be multifactorial, with opioid-induced constipation a common symptom in patients with advanced illness. Identify potentially reversible causes of constipation. Minimise or stop offending medications, make toilet facilities accessible, establish a bowel routine, use the gastrocolic reflex, and encourage fluid intake and activity if consistent with goals of care to avoid constipation. Laxatives are categorised according to the way they work on the bowel. The main types used in palliative care are stimulant, stool softening and osmotic laxatives (Department of Health and Human Services, 2009).

Treatment of constipation in palliative care is based on inadequate evidence, such that there are insufficient clinical trial data. recommendations for laxative use can be related to costs as much as to efficacy. There have been few comparative studies, equally there have been few direct comparisons between different classes of laxative and between different combinations of laxatives. There persists an uncertainty about the best management of constipation in this group of patients. (Miles, Fellowes, Goodman, & Wilkinson, 2009)

GRIEF

The Kbler-Ross grief cycle

Needs of someone experiencing grief

Support

Feel safe
Express feelings Tell their story

Experience acknowledged
Have pain and distress validated

Dealing with the Bereaved

Here are some key points to remember when dealing with the bereaved:

Grief is not an illness Is a unique process for each individual Grieving cannot be hurried There is no right or wrong way to grieve You cannot take away a bereaved person's pain People have different feelings and beliefs Be understanding, supportive and empathetic Respect their confidences Some people may be unable to come to terms with the painful reality of the event and remain unable to move on with life Know how to recognise abnormal/complicated patterns of grief

(NSW Department of Health, 2003)

You can help by being

Aware - Working through grief is a normal process, so

know what to expect. There - Take the time to listen and empathise. Sensitive - Encourage the bereaved to share their thoughts and feelings when they can. Compassionate - Be supportive and non-judgmental. Understanding - The loss of a significant person can be a most painful and emotionally disturbing experience. Respectful - Refer to the dead person by their name (except for some cultures).
(NSW Department of Health, 2003)

You can help by being

Helpful - Be practical in your offers of support. Considerate - Allow people to grieve in their own way. Tolerant - Tolerate silences and individual reactions. Accepting - Accept that tears are normal and healthy. Accommodating - Allow the bereaved to express unhappiness. An active listener - Encourage talk about the deceased including their special endearing qualities, and other aspects. Patient - Mourning the loss of a loved one can take time but ensure expectations are realistic. Prepared - Understand how grief can manifest itself and be vigilant for signs of complicated grief. Ready - Know to whom the bereaved can be referred if they need more help. Open - Provide information supportively (NSW Department of Health, 2003)

The key to good listening skills

(NSW Department of Health, 2003)

Factors which affect grief

Whether the death was sudden or expected The significance of the relationship between the bereaved and the deceased Circumstances surrounding the death The nature of the relationship between the bereaved and the deceased The resultant change in lifestyle The physical and mental health of the bereaved person Religious and spiritual beliefs of the bereaved Cultural response to death Age of the deceased person Number of losses or other major stresses (past and concurrent) experienced by the bereaved Perceived level of family/interpersonal and community support The way children grieve varies according to age

(NSW Department of Health, 2003)

(Journey of Hearts A Healing Place in CyberSpace, 1998)

WHEN AND WHAT TO REPORT

Early signs
Pain

Loss of appetite
Bladder/bowel changes Restless

Agitated

Later signs
Breathlessness (dyspnoea)

Nausea/vomiting
Respiratory secretions Extreme fatigue

PAINAD assessment tool

The Pain Assessment in Advanced Dementia (PAINAD) was developed to assess pain in patients who are cognitively impaired, non-communicative, or suffering from dementia and unable to use self report methods to describe pain. Observation of patients during activity records behavioural indicators of pain:
Breathing

Negative vocalisation Facial expression Body language Consolability.

(Massachusetts General Hospital, 2010)

 UTI nitrates and blood protein not so much of an

issue is present in urinalysis Spinal cord compression tumour Feculent smells like faeces

References

Palliative Care Australia Incorporated. (2010). End of life Care . Retrieved November 25, 2010, from Palliative Care Australia Incorporated: http://agedcare.palliativecare.org.au/Default.aspx?tabid=830 Canterbury District Health Board. (2008). Oral care in patients at the end of life. Retrieved January 11, 2011, from Healthfirst: http://www.cdhb.govt.nz/documents/palliative-caremanual/palliativecare/Oral%20Care%20in%20Patients%20at%20the%20end%20of%20life.pdf Bove, L. (1994). How fluids and electrolytes shift. Nursing 94 , 24 (8), 34-39. Christensen, K., Haroun, A., Scheiderman, L., & Jeste, D. (1995). Decision-making capacity for informed consent in the older population. Bulletin of the American Academy of Psychiatry and the Law , 23, 353-365. Department of Health and Human Services. (2009). Laxatives in palliative care. Retrieved January 15, 2011, from Department of Health and Human Services: http://www.dhhs.tas.gov.au/__data/assets/pdf_file/0010/36946/Laxatives_130509.pdf Edith Cowan University. (2005). Guidelines for a palliative approach to residential aged care: A systematic review of the literature. Department of Health and Ageing. Churchlands, WA: Department of Health and Ageing. Hospice Patients Alliance: Consumer Advocacy. (2010). Terminal Agitation: A Major Distressful Symptom in the Dying. Retrieved November 25, 2010, from Hospice Patients Alliance: Consumer Advocacy: http://www.hospicepatients.org/terminal-agitation.html

References

Journey of Hearts A Healing Place in CyberSpace. (1998). What is grief? Retrieved December 11, 2010, from Journey of Hearts: http://www.journeyofhearts.org/kirstimd/grief1.htm Miles, C., Fellowes, D., Goodman, M., & Wilkinson, S. (2009). Laxatives for the management of constipation in palliative care patients (Review). Retrieved January 15, 2011, from Cochrane Database of Systematic Reviews: http://onlinelibrary.wiley.com/o/cochrane/clsysrev/articles/CD003448/pdf_abstract_fs.html NHS Lothian. (2008). Palliative Care Guidelines: Mouthcare. Retrieved January 11, 2011, from NHS Lothian: http://www.nhslothian.scot.nhs.uk/ourservices/palliative/documents/mouthcare.pdf NSW Department of Health. (2003). Bereavement Care - General Bereavement Support Information for Staff. Retrieved December 11, 2010, from NSW Health: http://www.health.nsw.gov.au/pubs/2003/pdf/bereavement_care.pdf Schneider, A., Nelson, D., & Brown, D. (1993). In-hospital cardiopulmonary resuscitation: a 30 year review. Journal of American Board of Family Practice , 6 (2), 91-101. Ward, R. (2009). End-of-life legal considerations. The Journal for Nurse Practitioners , 5 (9), 668-672. WHO. (2010). WHO Definition of Palliative Care. Retrieved November 25, 2010, from World Health Organisation: http://www.who.int/cancer/palliative/definition/en/ Willmott, L. (2010). Advance directives and the promotion of autonomy: A comparative Australian statutory analysis. Journal of Law and Medicine , 17 (4), 556-581.