Objectives you will be able to

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1 Living & Dying Contributing to balanced decisions in palliative Paula Leslie Kate Krival Joseph Murray Objectives you will be able to explain range of in palliative services goes beyond end of life explain importance of informed autonomy in patient directed integrate frameworks supporting robust &ethically sound interventions compare & contrast utility of enteral feeding in differing end of life scenarios Historical development: Realization 1940 s Evaluation of cancer services as more than curative: F R Abrams, G Jameson, M Poehlman and S Snyder, Terminal in cancer. A study of two hundred patients attending Boston clinics, N Engl J Med 232 (1945), pp Realization of psychosocial aspects of chronic illness and end-of-life F E Lindemann, Symptomatology and management of acute grief. 1944, Am J Psychiatry 151 (1994), pp

2 Historical development: Examination 1960 s M Bard, The psychologic impact of cancer, Il Med J 118 (1960), pp PH Brauer, Should the patient be told the truth?, Nurs Outlook 8 (1960), pp CK Aldrich, The dying patient's grief, JAMA 184 (1963), pp CM Parkes, Recent bereavement as a cause of mental illness, Br J Psychiatry 110 (1964), pp Historical Development: Action Cicely Saunders to Dr A N Exton Smith. In: D Clark, Editor, Cicely Saunders. Founder of the hospice movement, selected letters , Oxford University Press, Oxford (2001), p. 38. D Clark, Total pain, disciplinary power and the body in the work of Cicely Saunders , Soc Sci Med 49 (1999), pp Historical Development: Action 1980 s 1982 Medi funds hospice 1990 s National bodies formed and expanded focus F National Hospice Organisation Became National Hospice and Palliative Care Oganisation F American Academy of Hospice Physicians Became American Academy of Hospice and Palliative Medicine

3 Lexicon & misunderstanding World Health Organization (2002) Palliative is an approach that improves the quality of life 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 Goals & pain management Palliative more expansive in its goals Has sought to move influence upstream to earlier stages in disease progression. Leads to definitional and boundary problems encountered in relation to supportive Why don t P&SC consult SLP?

4 Why SLP fears P&SC Risk aversion Defensive medicine Supplement additional testing or treatment Replace referral to another physician or health facility Reduce refusal to treat particular patients

5 Death aversion Guiding Ethical Principles Benefience Autonomy Justice Nonmaleficence Autonomy Respect another s worth & right to make choices Accept that patient may choose not agree to our best practice idea Understand that patient may value eating a little with family despite risk of choking

6 Beneficence Take positive action to do good for others AND act to prevent or remove harm Liaise with nutritionist to optimize nutrition & hydration with an altered diet Assess patient s swallow function comprehensively to identify physiological impairment Nonmaleficence Avoid causing harm Do not recommend surgical procedure that patient would be harmed by Do not recommend diet resulting in inadequate hydration Justice Provide what patients need in fair & equitable manner Consider cost of procedure Likely benefit to patient & to all patients?

7 Evidence Based Practice Clinical Expertise Patient Preference Best Evidence MEP & EBP Clinician Expertise + Best Evidence = nonmaleficence Patient autonomy + Clinician Expertise = beneficence Best evidence + patient autonomy = justice misunderstanding Patient & EBP Clinical Expertise Patient Preference Best Evidence

8 The Waiver Developed to document informed refusal Only as useful as documented discussion upon which they are based If not clear that patient was informed and that clinician considered patient s preferences, etc. may be viewed as coercion Informed patient Informed clinical expert Experience of condition Diagnosis of condition Attitudes: risk, values, preferences Outcome probability: decline/death Prognosis: enhancing & limiting factors Outcome probability: decline/death Capacity & informed choice To balance autonomy with beneficence Consider patient s capacity to make decisions Implies ability of patient to communicate choices understand relevant information appreciate consequences manipulate information rationally

9 Outcomes If goal isn t habilitation or rehabilitation, what is it? Ideas: reduce distress reduce risk of adverse events increase satisfaction Unfamiliar territory? Use a map Minimum Data Set Tool A-3 identify LTC resident likely to benefit from PC provides format for team consensus on plan of Goals Pt will... Exhibit minimal to no distress during oral intake Approaches: diet changes, feeding methods, equipment, environment, oxygen level, time to rest/breathe, etc.

10 Reducing risk Clean mouth Throughput Positioning Conscious Airway Education Patient preference Autonomy Baby food Tooth Smuggling Advanced Current directives Education Best decision? Stakeholders Prognosis & certainty Institution Legal Nonjudgemental

11 Burdens and Complications Associated with PEG Wound dehiscence Skin excoriation Tube migration Pain at tube site Diarrhea Nausea Loss of gustatory pleasure Restraint use Aspiration GER Abdominal abscess GI bleeding Loss of social interaction Peritonitis Tube malfunction Necrotizing fasciitis Bowel obstruction Vomiting Pneumonia Gastric performation The Clinical Evidence Early Evidence: PEG placement after stroke decreased mortality, treatment failures and malnutrition (Norton et al., 1996; Duncan et al., 1992) More recent Cochrane review (2005) F too few studies have been performed, and those have involved too few patients FOOD trial No benefit to early vs. delayed PEG feeding F F Increased risk of death Poor neurologic outcome with PEG compared to NG use FT in Advanced Dementia (Finucane et al., JAMA 1999) Does not improve nutritional status Does not prevent aspiration Does not reduce occurrence of pneumonia Does not increase life expectancy

12 Enteral tube feeding in older people with advanced dementia: Findings from a Cochrane systematic review (Candy et al., 2009) Full literature review completed in April 2008 No RCTs were identified 7 observational studies: F 6 assessed mortality (no evidence of increased survival with enteral feeding) 0 studies examined effect on QOL and No evidence of benefit F Nutritional status F Prevalence of pressure ulcers Conclusions: Insufficient evidence to suggest that enteral TF is beneficial in people with advanced dementia Data is lacking on the adverse effects of this intervention SLP Misconceptions About PEG in Advanced Dementia (Sharp & Shega, 2009) Survey of 1,050 medical SLPs Describe beliefs and practices about use of PEG in pts with advanced dementia Response rate of 57% 56% of SLPs recommend PEG F Many believe that PEG improves nutritional status and increases survival 40% believed that PEG was standard of 15% believed it should be standard of Only 11% of SLPs would want a PEG themselves Tube Feeding in Patients with Advanced Dementia: Knowledge and Practice of Speech- Language Pathologists Vitale, C., Berkman, C., Monteleoni, C, Ahronheim, J. (2001) Survey of 731 SLPs Self perceived preparedness Knowledge Care recommendations Misperceptions about evidence are common Only 22% recognized tube feeding unlikely to reduce risk of aspiration pneumonia 70% were willing to recommend oral feeding despite high risk of aspiration

13 Regnard et al. Gastrostomies in dementia: bad practice or bad evidence? Any intervention that is completely ruled out for a particular population prevents individually tailored Decisions should be based on the: speed and cause of deterioration assurance that all methods have been used to maximise oral feeding, including the transfer from plate to mouth consideration of the potential advantages of feeding and/or hydration Regnard et al continued feasibility and disadvantages of alternative routes presence of malnutrition, which delays healing and risks refeeding syndrome levels of distress from oral feeding patient s present perception of benefit if they have capacity for this decision patient s best interests if they do not have capacity for this decision. Are PEGs Inserted Too Late? Delayed identification increases risk of malnutrition Patients with low albumin do worse than those with normal albumin following PEG (Nair et al., 2000)