The Role of Palliative Care in Advanced Lung Disease

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1 The Role of Palliative Care in Advanced Lung Disease Timothy B. Short, MD, FAAFP, FAAHPM Associate Professor, Palliative Medicine University of Virginia

2 Learning Objectives Describe palliative care s approach to symptom burden and management of the most common symptoms in advanced pulmonary disease Understand prognostication and hospice eligibility in patients with advanced pulmonary disease Describe a framework of approach in difficult conversations (goals of care and code status) with patients with advanced pulmonary disease

3 Disclosures I have no financial disclosures

4 The Role of Palliative Care in Advanced Lung Disease Addressing symptom burden to optimize quality of life Dyspnea, fatigue, depression, anxiety, inappetence, sleep difficulties Dyspnea, anxiety and depression are the most prevalent symptoms Addressing psychosocial and spiritual dimensions to care Addressing difficult conversations Goals of care, treatment plans, prognosis, end of life care/preparation

5 What is most important to patients with advanced lung disease? Assuring comfort Assuring that they are not a burden to family Being fully informed in decisions Having a physician discuss COPD in an understandable fashion Adequate support/health services upon discharge from the hospital Can Respir J. 2008;15(5):

6 Paradigm Shift: Palliative care in advanced lung disease PC is introduced when all other disease modifying treatments have been exhausted Implement palliative care based on need rather than on prognosis

7 The Palliative Care Approach to Managing Dyspnea in Advanced Lung Disease Treat any underlying contributing causes for dyspnea Patient/family goals dictate therapeutic interventions Dyspnea is usually accompanied by other dimensions of suffering that need to be addressed: anxiety, depression, relational concerns, financial burdens, spiritual or existential suffering.

8 Opioids for dyspnea in Advanced Lung Disease The most effective treatments remain treating the underlying cause of dyspnea Opioids are increasingly being used to treat dyspnea in setting of optimal medical management Mechanism of action of opioids in treating dyspnea is still not completely known

9 Opioids for dyspnea in advanced lung disease Cochrane Review 2016 More heterogeneous cohort: advanced lung cancer, respiratory or cardiovascular disease, receiving palliative care for any other disease 26 studies with 526 participants: RCTs with low risk bias, 24/26 double blinded Because the studies were small, the quality of evidence was downgraded from high to either low or very low Conclusions: There is some low quality evidence that shows benefit for the use of oral or parenteral opioids to palliative breathlessness, although the number of included participants was small. We found no evidence to support the use of nebulized opioids. Cochrane Database of Systematic Reviews 2016, Issue 3. Art. No.: CD011008

10 Benzodiazepines for Dyspnea Cochrane Review 2016 Studies were small and targeted patients with advanced cancer and COPD (8 studies, 214 patients) All studies showed no benefit in relieving symptom of dyspnea in patients with advanced cancer or COPD (compared to placebo, midazolam, morphine and promethazine No benefit in preventing dyspnea compared to morphine No statistically significant differences in effect between type of benzodiazepine or dose, route, frequency, or duration Produced statistically significant more adverse effects, particularly drowsiness and somnolence Cochrane Database of Systematic Reviews 2016, Issue 10. Art. No.: CD007354

11 High Flow Oxygen in Advanced Disease Can have a role in advanced disease When a reversible/treatable element is at play Goal oriented end-of-life care Demands that discussion and decision to offer these therapies include discussion on when/how to stop these therapies

12 NPPV in Advanced Disease Burden and Benefits of NPPV Treatment of reversible respiratory illnesses Postpone Death to achieve short term goals Provide relief of dyspnea while other strategies are employed Potential to medically prolong the dying process Can be uncomfortable and worsen suffering, not lessen it May burden family with decisions to withdraw care May interfere with communication at the end of life Essential Practices in Hospice and Palliative Medicine, Fifth edition, p. 14

13 Anxiety in advanced lung disease Very common: 25% of cancer patients 50% of CHF and COPD patients 10% of patients with COPD meet DSM V criteria for GAD Multiple contributors to etiology Prominent component to chronic pain and dyspnea Adverse drug effect (Steroids, nebulized meds, antidepressants) Drug withdrawal (nicotine, benzos, opioids, etc.) Existential and psychosocial concerns: loss, dying, finances, family stress, existential angst Treatment: Nonpharmacological (very important and beneficial) SSRIs, SNRIs, judicious Benzos Olanzapine

14 Cochrane Review of Anxiety in advanced COPD Four studies met inclusion criteria (40 participants) 3 classes of meds used in studies: SSRIs, TCAs, azapirones Meta-analysis was not able to be completed due to small sample size and poor quality studies Bottom line: We do not currently have evidence basis for treating anxiety pharmacologically in COPD patients

15 Depression in advanced lung disease Endicott substitution criteria: Replace physical/somatic symptoms (weight changes, sleep, fatigue, appetite) by Psychological symptoms (tearfulness, social withdrawal, brooding/self-pity, lack of creativity/blunting) Powerful screening tool: a Single Question Are you feeling down, depressed, or hopeless most of the time over the last two weeks? Don t forget non-pharmacological approaches Treatment is dictated by prognosis Prognosis hours to days: antipsychotics (delirium can mimic) or sedation Prognosis days to weeks: methylphenidate and SSRI Prognosis weeks to months: SSRI

16 Cochrane Central Register of Controlled Trials Study aim: Did treating depression in patients with moderate to severe stable COPD improve quality of life and exercise tolerance? N=135 patients Study design: double blind RCT Patients were treated with paroxetine (Paxil) 20 mg daily for 6 weeks or placebo (blinded): no change in depression scores, quality of life scores, or 6 min walking distance They were then unblinded and treated/followed for 3 months which showed significant improvement of depression scores, walking distances, and quality of life scores.

17 Prognostication in advanced pulmonary disease Disease trajectory is the best reference of approach Three most accurate prognostic predictors: Nutrition Function Cognition One other predictor that trumps the three proven predictors: will to live

18 Function High Disease Trajectory in advanced lung disease Organ System Failure Trajectory (mostly heart and lung failure) Death Low Multiple hospitalizations Death usually follows disease exacerbation

19 Hospice eligibility criteria Functional impairment related to disease progression (PPS<70%) Dependence on 2 or more ADLs Disease specific guidelines: Disabling dyspnea at rest on optimal medical management (FEV1<30%) Progressive disease as evidenced by increasing medical encounters due to pulmonary infections or respiratory failure Hypoxemia at rest on RA (po2<55 mmhg or O2 Sat< 88% Hypercapnia (pco2<55 mmhg) Other supporting criteria: Right heart failure (cor pulmonale) due to pulmonary disease Unintentional progressive weight loss of 10% IDW Resting tachycardia (>100/min)

20 Hospice Eligibility: Bottom Line CERTIFICATION BASED ON PHYSICIAN S MEDICAL JUDGMENT THAT PROGNOSIS IS 6 MONTHS OR LESS IF THE DISEASE RUNS ITS NORMAL COURSE

21 Family Meeting/Goals of Care A family meeting/goals of care discussion is like any other medical intervention Done well: it can offer healing and hope Done poorly: it can cause harm and unintended injury to the patient and family Misunderstanding of disease or prognosis Misunderstanding of goals of treatment Lack of involvement of patient in treatment planning

22 The Language of a Family Meeting This is not a meeting spoken in medical language This is not a meeting explaining medical language This is a meeting intended to help a family love and care for their loved ones This is about speaking the family s language of caring, of loving.

23 Short s Best Ways to Fail at a Goals of Care Family Conference 1. Expect to have all the answers completed in one family meeting. 2. Expect everyone to be happy with the outcomes. 3. Hold the family meeting without all the important players. 4. Use a family member as your interpreter. 5. Go in with an agenda. 6. Go in with someone else s agenda. 7. Start the discussion with a discussion about code status.

24 The Agenda You need to get a DNR this patient is unstable and at risk You need to get them to understand that this care is futile they just don t get it This is a reversible and treatable condition don t throw them under the bus they can survive this

25 The Huddle Critical to assure a successful outcome Move from Where to What to Who Where: Where should the meeting take place? What: What is the agenda? Who: Who will start and run the meeting?

26 Structure of a Goals of Care Conversation Beginning: Focus on the person (WHO) Middle: Focus on the current status (WHAT) End: Focus on care plan (WHERE)

27 The Beginning: Focus on WHO The time out before entering the room: Not my agenda, but your agenda Setting up the meeting to be successful: no interruptions, everyone seated, everyone introduced, setting the agenda, previous discussions, decision making preferences Starting with the focus being on the person, not the patient: I ve spent the last 30 minutes reviewing all of your labs, scans, consult notes, etc I know a lot about your medical condition, but I d like to know about you, the person as that is what is most important to us in treating you can you tell me a little about yourself? What is important to you?

28 The Middle: Focus on What is your understanding? Start with an open ended question: Can you tell me what your understanding of your condition is at this point? What have the doctors explained to you? The more that the patient/family talk (and the less the practitioner talks), the better the outcome of the meeting as perceived by the patient/family Clarify any gap of understanding between what the patient shares and what you know to be a realistic summary of their condition

29 The End: Focus on Where do we go from here? This transition is also best approached with an open ended question: Would it be helpful if we talked about the prognosis? What we might realistically expect in the future? To be able to address this, we must be able to address prognosis. It is best to approach this humbly, realistically, and clearly

30 Making a Recommendation Always ask permission before making a recommendation Go back to the initial description of the person and what is important to them, and merge this with what you believe to be the most likely outcome/prognostic outlook and base your recommendation on these Give them time to reflect and respond to this and then decide together, a clear plan of care Summarize and close

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