Objectives. Sometimes We Get Ahead of Ourselves 5/22/2015

Size: px

Start display at page:

Download "Objectives. Sometimes We Get Ahead of Ourselves 5/22/2015"

Neal Henry
6 years ago
Views:

Withholding and Withdrawing No Longer Beneficial Medical Interventions: Historical, Ethical and Practical Issues Marcia Levetown, MD FAAHPM HealthCare Communication Assocs Houston, TX

1 Withholding and Withdrawing No Longer Beneficial Medical Interventions: Historical, Ethical and Practical Issues Marcia Levetown, MD FAAHPM HealthCare Communication Assocs Houston, TX Objectives Be able to explain why the issue of withholding or withdrawing (w/w) medical intervention became relevant to care Recognize patient scenarios for whom w/w is relevant Be able to address issues of w/w with clarity and compassion Know how to prevent distressing symptoms during the practice of w/w Discuss the issues of tissue and organ donation in the face of w/w Sometimes We Get Ahead of Ourselves 1950: Ventilators come out of the OR and into the ICU, polio epidemic. First in US in 1955, Dartmouth CPR, 1960 Apply medical intervention without data in effort to preserve life. PVS cases arise. Supreme Court involvement DNR policies first appear in 1976, President s Commission 1983 Then ANH controversies, Nancy Beth Cruzan Dialysis, ventilators, AICDs, LVADs, balloon pumps 1

Conceptual Framework Assessment of Benefit Clearly Beneficial Marginal/ Uncertain Benefit Clearly Nonbeneficial Benefit vs Burden What are the hoped for outcomes? What is the likelihood?

2 Conceptual Framework Assessment of Benefit Clearly Beneficial Marginal/ Uncertain Benefit Clearly Nonbeneficial Benefit vs Burden What are the hoped for outcomes? What is the likelihood? What are the risks and their likelihood? What are the alternatives? Consider: Dialysis in PVS LVAD or AICD in MOSF Minimally Conscious Patient After Anoxia Is patient terminal? Is that relevant to the ability to stop or not start interventions? How are brain dead, PVS and MCS different and the same? Does patient have known values? What are likely terminal events? What should be discussed regarding forgoing or withholding interventions? What does the law support? 2

Words, Feelings, Consequences What is a life-sustaining treatment?

3 Is Withholding Different than Withdrawing? What Words Do You Use to Discuss Withholding or e Withdrawing with Your Patients and Families? Words, Feelings, Consequences What is a life-sustaining treatment? How might this phrase influence decision-making, grief and guilt? How can one determine if it is a no longer beneficial treatment? Role of time limited trials What non-icu interventions can be described this way? How do UNSPOKEN goals, guilt and grief influence choices? How do you intervene? 3

Words, Feelings, Consequences What we wish could happen but won t; what we can realistically hope for is Which of those goals seems reasonable in light of your Mom s priorities?

4 Words, Feelings, Consequences What we wish could happen but won t; what we can realistically hope for is Which of those goals seems reasonable in light of your Mom s priorities? We ve tried this long enough to see it is not working, so it is not giving up - you tried everything that might have helped Role of the Surrogate Showing love and respect Putting your Dad s priorities before your own desires Step-wise Process for Timelimited Trials Define a therapeutic goal Gain a firm and clearly stated commitment to that goal by all the parties Try intervention for an agreed-upon period of time, set up meeting to review outcome Observe effects of treatment closely Encourage family to observe closely Time-limited Trials Including family in this way helps them come to terms with the impending death of their loved one. Should the goal not be met by the end of the therapeutic trial, the trial is then concluded and the treatment stopped. Excerpted from Frederich M. Artificial hydration and nutrition in the terminally ill. American Academy of Hospice & Palliative Medicine Bulletin, Fall

Don t Judge the Technology Strive to understand patient and family perspectives and make recommendations on this basis Often they are seeking symptom relief and improved QOL more than life

other practitioners Sometimes our colleagues get lost in the Technological Imperative and families need permission to say NO What Does Ethics and Present Law Say?

5 Don t Judge the Technology Strive to understand patient and family perspectives and make recommendations on this basis Often they are seeking symptom relief and improved QOL more than life extension Medications may have failed them in the past Being complex does not make it bad Patients and families may not be aware of burdens, may feel they have no choice based on presentation by other practitioners Sometimes our colleagues get lost in the Technological Imperative and families need permission to say NO What Does Ethics and Present Law Say? It is morally and legally permissible to base treatment decisions on: Patient priorities and preferences Impact on QOL, patient defined dignity Prognosis In Texas, this includes ANH, ABX, etc. Neuromuscular Disease and the Jet Setter 5

Benefits and Burdens Change Over Time Disease progression, multimorbidity Best if addressed when technology is applied and intermittently over time but WE do not usually have that choice, so May be

Assess ALL Sources of Distress for Remedies Use the whole team Address depression with rapidly acting medications, if present Once a Decision to Stop is Made, ANTICIPATE Sx and be Ready!

6 Benefits and Burdens Change Over Time Disease progression, multimorbidity Best if addressed when technology is applied and intermittently over time but WE do not usually have that choice, so May be a surprise. Most likely the patient has been thinking about it; family may be unaware When the topic is broached by the patient, what is most important to assess? Assess ALL Sources of Distress for Remedies Use the whole team Address depression with rapidly acting medications, if present Once a Decision to Stop is Made, ANTICIPATE Sx and be Ready! ALWAYS describe the potential outcomes: life expectancy, appearance, symptoms and their treatment Stop vent- life expectancy, appearance, sxs? Stop prostacyclins for pulm htn? Stop LVAD? Starting to sound familiar, isn t it? Stop dialysis- sxs? 6

7 Mrs. M Multi-infarct dementia, but able to read, do puzzles, visit with family, hold a conversation Aspirating, hospitalization x 3 in last 5 months for aspiration pneumonia. Now has J tube following episode of vomiting and distention with G tube Rapid weight loss, colectomy 12/14 for colon CA, IIIA; weight loss persistent post op Longstanding history of dry mouth, facility prefers her to be NPO Mrs. M What would you discuss with Mrs. M and her family? QOL priorities Likely course of events Interventions and their outcomes, potential time limited trials Recommendations regarding treatments that will not likely be beneficial How to maintain comfort Vent Withdrawal 49 yo, ALS 15 year old drowning 68 yo COPD 80 yo HIE Issues: Conscious v. unconscious Values expressed or demonstrated vs not (age) Likelihood of breathlessness 7

8 Vent Withdrawal If patient is conscious Enable goodbye rituals Suggest sedation in advance of withdrawal Be prepared to dose rapidly in the event of distress Documentation critical! Extubation vs weaning O2 vs CO2 If patient is unconscious Sedation? ALS Patient on Home Ventilator, Able to Communicate Assess patient s goals, values Expected course of illness, potential thresholds regarding QOL Assistive devices available, cost, coverage Family willingness, potential locations of care If vent forgone, what personnel are needed and where are they available? If institutionalized, what are relevant policies and capacities? Is a move required? Prostacyclin for Pulm Htn No approved guidelines COPE (Care Of Pulmonary hypertension patients at End-of-life) Collaborative suggests tapering by 25%, waiting 4-5 half lives of drug and tapering further, 25% each time, as tolerated Simultaneously, treat as though this is a vent withdrawal with opioids for breathlessness, benzodiazepines or barbiturates or other sedatives for anxiety and sedation. Titrate to symptom response. DOCUMENT! 8

62 Year old Man with CHF, Pacemaker, AICD, Inotropes Assess patient goals Indications, evidence for current treatments? Benefits and burdens Symptoms to anticipate if stopped?

9 62 Year old Man with CHF, Pacemaker, AICD, Inotropes Assess patient goals Indications, evidence for current treatments? Benefits and burdens Symptoms to anticipate if stopped? Preventing/ controlling symptoms Sedation? LVADs: Fast Facts 205, 269, 33, 34 Initially bridge to transplant, then approved for destination therapy based on significantly improved QOL and longevity. Significant improvement in technology, QOL, life expectancy in last 5 years Daily maintenance and need for cleanliness, no submersion in water Clinical situations leading to LVAD deactivation: catastrophic complications (e.g. drive line infections, stroke, sepsis, multiorgan failure); Poor QOL (e.g. chronic infections, intolerance of dialysis); Serious comorbidities (e.g. cancer, dementia) 21 Year old Man with DMD and Cardiomyopathy Destination LVAD? 9

10 Tips on LVAD D/C Collaborate with LVAD team/ nurse specialist Turning off is brand and model dependent Turn off alarms, discontinue electronic monitoring, stop external device Patient s circulation will immediately decrease so PRE- BOLUS MEDS to ensure they are useful to the patient Other advanced devices are usually stopped at the same time Patients live minutes to a few days 65 yo with ESRD, Diabetic Neuropathy, Chronic Pain Wants to stop dialysis after 5 years of treatment Questions to ask Depression Inadequate pain treatment Financial or family concerns If stopped, time course to death? Possible mechanisms of death? Role of Kayexalate? Symptom control? Role of opioids? After Stopping Dialysis: Fast Fact 208 Avg life expectancy is 8-10 d, rarely linger for weeks Encephalopathy common, sedation may be necessary In one cohort of hospitalized pts stopping dialysis: Confusion/agitation 70% Pain 55% Dyspnea 48% Nausea 36% Twitching/seizures 27% Anxiety/psychological distress 27% Pruritis 24% Peripheral edema 21% 10

11 Medications After Stopping Dialysis Agitation: r/o pain, hypoxia Low dose benzodiazepines or low dose haloperidol (50% of usual, as it accumulates in renal failure; haldol can lower Sz threshold) Clonazepam ( mg bid) or Clonidine ( mg bid) for restless legs, cramps Pain: Stop hydromorphone, gabapentin, pregabalin- they accumulate. Use APAP, methadone, fentanyl Dyspnea: O2 as beneficial Edema: Reduce fluid intake, suggest pleasure eating; if UOP > 100 cc, can try diuretics Medications After Stopping Dialysis Nausea: Gastroparesis- low dose metoclopramide Uremia induced: DA antagonists (haloperidol, prochlorperazine)- sedating Ondansetron- less sedating, does not accumulate Pruritis Ondansetron Emollients Antihistamines Patient with AIDS, Inanition, Recurrent Infection Are antibiotics comfort measures? Are antibiotics ordinary treatments? Does ordinary/ extraordinary matter? How would you approach the topic? Is there ever a reason to discontinue HAART? 11

12 What are the Data on CPR? Why Think About Tissue or Organ Donation? Is it ever relevant to a hospice patient? Comments and Questions 12

Objectives. Sometimes We Get Ahead of Ourselves 3/6/2015

Objectives. Sometimes We Get Ahead of Ourselves 3/6/2015 Withholding and Withdrawing No Longer Beneficial Medical Interventions: Historical, Ethical and Practical Issues Marcia Levetown, MD FAAHPM HealthCare Communication Assocs Houston, TX mlevetown@earthlink.net