End of Life Issues

1. End of Life Issues

2. Illness transition • For most patients with cancer, the initial aim and hope is for cure • For those who develop recurrent malignant disease, there is the likelihood that the disease is incurable • The transition from curative intent to palliation is difficult for many, often resulting in despair, denial, depression, anxiety or resigned indifference • Patients and their carers require sensitive guidance through this transition

3. Goals of Care Curative (“beating it”) • Cure or durable remission • Prognosis: years Palliative (“living with disease, anticipating death”) • Disease incurable and progressive • Prognosis: weeks, months (but can be years) Terminal (“dying very soon”) • Death imminent • Prognosis: hours or days Ashby M, Stoffell B. Therapeutic ratio and defined phases: proposal of ethical framework for palliative care. BMJ 1991; 302: 1322-1324

4. Key questions if ceasing active treatment is considered • Are the clinical facts of the case well established? Is the diagnosis correct? • Has sufficient time elapsed to be reasonably confident that there is no reasonable prospect of substantial improvement or recovery? • Is there consensus among the clinicians about the diagnosis, prognosis and most appropriate course of medical action? Is a case conference necessary?

5. Key questions if ceasing active treatment is considered • Identify the key decision maker(s) in the family or friends • Have the family, carer(s) or legally appointed agent been advised of the above? Have they had a chance to express their opinions, and been involved in the decision making process? • Has the patient’s GP been involved?

6. Key questions if ceasing active treatment is considered • Has the decision to stop active treatment been documented? The plan for implementing it may involve a “time trial” of continued life-sustaining treatment. How will subsequent objections to the decision be dealt with? • Has a consultative palliative care team referral been considered? Ashby MA, Kellehear A, Stoffell BF. Resolving conflict in end of life care. Editorial MJA Vol 183 No 5: 5 Sept 2005 230-231

7. Progressive, life limiting illness management approach: Patients, primary carers and families • are provided with information to allow them to make informed decisions • are encouraged to participate in the development of their care plan initially and on an ongoing basis Referral to palliative care specialist services when needs are, or will become complex • Complex pain or symptoms not responsive to established protocols • Complex psychological and/or social needs • Increased risk of complicated bereavement for the primary carer and family A Guide to Palliative Care Service Development: A Population based approach Palliative Care Australia Feb 2005

8. Negotiating Ceasing Active Treatment • The patient and caregivers deserve a frank assessment of the likelihood of response to treatment and its duration • Deal with the control issue - a feeling of loss of control may be a major component of patient’s distress • Both the patient and the doctor need to recognise that doctors do not stop treating patients when they stop active therapy. Rather, a different treatment program has been chosen • To continue toxic treatment solely to maintain hope of some response is inadequate medicine. To continue to allow patients and caregivers to put their hope in things that are highly likely to fail (eg, further chemotherapy) is at best ill advised and at worst avoiding the real issue.

9. Negotiating Ceasing Active Treatment • There comes a time when a patient with incurable disease is best served by placing his or her hope in things that will not fail, be it a doctor’s ongoing care, the love of the family, religious beliefs, and so on. • Show the patient, and their family that you care • Don’t cut the patient loose at this time • Multidisciplinary team is needed to provide • Spiritual and psychosocial support • Symptom control • End of life care • Bereavement support Harnett PR, Moynihan TJ. But Doctor, What Have I Got to Lose…? JCO: Vol 19(13) July 1, 2001

10. Negotiating Ceasing Active Treatment • Good communication with GP essential. GP may be asked for another opinion by patient and/or carers • Appropriate involvement of nursing resources, hospital and community. At this stage, good nursing care may become the most significant need for patients and carers

11. Preserving dignity • Patients are exposed to many events and situations during their illness which may enhance or impede their dignity • Healthcare processes • Illness related complications • Family systems • Welfare systems

12. Maintaining dignity • Continuity of self - a sense that the essence of who one is, continues to remain intact, despite advancing illness • Role preservation - the ability to continue to function in usual roles • Legacy - the comfort in knowing that something lasting of oneself will transcend death • Maintaining pride - the ability to maintain a positive sense of self regard or respect • Maintaining hope - an ability to see life as enduring, or having sustained meaning or purpose • Autonomy/control • Acceptance - the internal process of resigning one’s self to changing life circumstances Chochinov H M, Dignity and the Eye of the Beholder JCO: Vol 22(7) April 2004

13. Challenging communication tasks - 1 • Doc, how much time do I have left? • Acknowledge uncertainty • Foretell a general, realistic time frame - days, days to weeks, weeks to months • Provide realistic hope • Recommend “doing the things that should be done” • Provide realistic assurance that you’ll be available to help the patient through the dying process • Refer for emotional and spiritual support in “dying well” • Ask patients what they want to accomplish • Encourage additional questions Loprinzi C et al Doc, How Much Time Do I Have? JCO Volume 18(3), February 2000

14. Challenging communication tasks - 2 • Goal setting framework • Create the right setting • Ask what the patient/family know • Explore what they are expecting or hoping for • Suggest realistic goals • Respond empathically to the emotions that will arise • Make a plan and follow through • Review and revise goals periodically Von Roenn JH, von Gunten CF Setting Goals to Maintain Hope JCO Volume 12(3), 1 February 2003

15. Addressing Spiritual Care: Calling for Help • A physician or health care professional who shows interest in spiritual care expresses concern for the “whole person” who has cancer. • The simple screening question, “What role does faith play in your life?”could be all that is needed to assess the dimension of faith in a patient, and to point the way for future support. Steer CJ & Lee C. Addressing Spiritual Care: Calling for Help JCO Volume 22(23), December 1, 2004

16. Addressing Spiritual Care: Calling for Help • Spirituality relates to an individual’s capacity to seek meaning and purpose in life. • Cancer commonly affects the spiritual dimension of patients with cancer • Religious beliefs and practices play a significant part in the way that some patients cope with their disease and how they make sense of what is happening to them. • For many patients, religious faith plays a major role in their lives • Faith provides patients with emotional support, social support and a root to meaning, all of which help them cope with the diagnosis and treatment of cancer Steer CJ & Lee C. Addressing Spiritual Care: Calling for Help JCO Volume 22(23), December 1, 2004

17. Palliative Care • 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 Nov 2003

18. Palliative Care • 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;

19. Palliative Care • 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.

20. PALLIATIVE CARE - WHEN? • In incurable progressive disease, there is a gradual transfer of focus from active treatment to a focus on quality of life and symptom control, the dying process and subsequent bereavement ACTIVETREATMENT BEREAVE-MENT DEATH DIAGNOSIS PALLIATIVE CARE

21. Palliative Care • Pain Management • Common Symptom Management • Communication • Family Support • Ethics and medical decision-making at end of life • Grief and Bereavement • Multidisciplinary Team Work • Emotional Care of Self

22. Palliative Care • Relief of suffering • Quality of Life • Comfort • Holistic care • Dying with dignity

23. Nursing Medical Pharmacy Physiotherapy Occupational therapy Diversional therapy Social work Psycho-oncology Psychiatrists Clinical psychology Bereavement counselors Pastoral care Volunteers Multidiciplinary team

24. PALLIATIVE CARE - COMMUNITY • GP “case manager” • Generalist Community Nurse - GCN • Clinical Nurse Specialist - CNS • Clinical Nurse Consultant - CNC • Palliative Care Medical Officer • Community Palliative Care Specialist

25. Advanced care directives - aims • Identifying what is important as a patient approaches death, especially the place of life sustaining treatment • Achieve a sense of control • Engage others in decision making, family friends • Provide flexibility in decision making • Advance care directions are optional Using Advance Care Directives NSW Dept of Health 2004 http://www.health.nsw.gov.au/policies/gl/2005/GL2005_056.html

26. Advanced care directives - barriers • Time constraints • Discomfort in talking about death: patient, family, health professionals • Patient perceptions about who should or does control medical decision making • Fears about being able to change one’s mind • Lack of knowledge about availability of advance care directives, or • Health professionals may not appreciate the legal standing of advance directives Using Advance Care Directives NSW Dept of Health 2004 http://www.health.nsw.gov.au/policies/gl/2005/GL2005_056.html

27. End of Life Care - Dying • Recognise it • Acknowledge it • Respect it • Treat symptoms • Support carers

28. TERMINAL CARE PHASE • The typical features of a person in this phase include the following: • Profoundly weak. • Essentially bed bound. • Drowsy for extended periods. • Disoriented for time and has a severely limited attention span. • Increasingly disinterested in food and drink. • Finding it difficult to swallow medication.

29. 2 ROADS TO DEATH THE DIFFICULT ROAD Confused Tremulous Restless Hallucinations Normal Mumbling Delirium Sleepy Myoclonic Jerks Lethargic Seizures Obtunded THE USUAL ROAD Semicomatose Comatose Dead

30. HANDY HINTS • Determine early where the patient would like to be cared for: home, hospital, hospice • Identify barriers that may prevent this from occurring • Encourage flexibility. Circumstances may change during the final stage • Use only medications essential for symptom control. Stop other medications and continue to offer opioids. • Remember accumulating serum concentrations of active drug and metabolites may lead to toxicity and terminal delirium. • Recognise the signs of the dying process.

31. Grief and Bereavement • Bereavement support is integral to palliative care • Grief after loss is a normal process, but may be complicated and compromise the health of an individual • Routine bereavement care helps to identify people at risk • Burden of grief can last for years • Need to pay attention to cultural differences • Excellent resources are available for grief management Maddocks, I.Grief and Bereavement. Medical Journal of Australia 15 Sept 2004, Vol 179, No 6 Supplement

32. Bereavement tasks • Accept the reality of the loss • Experience the pain of grief • Adjust to an environment from which the deceased is missing • Reinvest energy in other possibilities Worden, J. Grief Counselling and Grief Therapy. London: Tavistock, 1991

33. Bereavement Resources • Palliative care bereavement services • GP’s • Community nursing and mental health teams • Psycho-oncology services • Social work • Private bereavement services • Pastoral care

34. Facing the consequences of a progressive, life limiting illness can exhaust the physical and emotional resources of patients, primary carers and their families, and indeed can also deplete those of the health care professionals who care for them A Guide to Palliative Care Service Development: A Population based approach Palliative Care Australia Feb 2005

35. Impacts on carers • Stress • Disruptions and emotional strains • Health problems • Mental health issues • Reduced life opportunities • Financial strains Caring for a Dying Person in Australia Palliative Care Australia May 2004

36. Positive aspects of caring • Carers • expressed strong positive emotions about their care giving experiences • found significant meaning in their roles • felt self satisfaction knowing that they are doing a good job Grbich, C. Parker, D. & Maddocks, I. (2001) The Emotions and Coping Strategies of Caregivers of Family members with a Terminal Cancer. Journal of Palliative Care, 17(1), 30-36