1. Dr. Leah Steinberg Dr. James Downar
The Patient with Advanced Heart Failure: Bridging the Gaps in End of Life Care
Dr. Leah Steinberg
Dr. James Downar

2. Faculty/Presenter Disclosure
Canadian Hospice Palliative Care Association Webinar Series: Palliative Care for Non-cancer Illnesses: Heart failure
Faculty/Presenter Disclosure
Presenter Name Leah Steinberg Relationships with commercial interests: No relationships with commercial interests

3. Disclosure of Commercial Support
There is no financial or in-kind support for this program
Potential for Conflict(s) of Interest
None of the presenters have received payment for the presentation of this program
None of the products or programs discussed in this program made financial or in-kind contributions

4. Mitigating Bias
There are no biases to be mitigated.

5. Acknowledgments: It takes a village!
Susanna Mak
Heather Ross
Amna Husain
Jennifer Arvinitis
Russell Goldman
Meghan White
Bhadra Lokuge
Deb Selby
Janna Pilkey

6. Learning Objectives: Review the basics of Heart Failure;
Understand the challenges in the palliative management of patients with Heart Failure;
Assess and manage symptoms in End-Stage Heart Failure;
Understand the challenges in ICD deactivation.

7. A few cases to get us started

8. MR. OW Jan 2013 HF symptoms Feb 2013 admission May 2013 admission
June 2013 clinic visit
Sept 2013 clinic visit
Apr 2014 admission
CHF
EF 17%
Lasix 80 mg bid BB
Spiranol.
Nitrates
EF 33%
Walking
BB 
Cr 200
EF 35%
Symptoms Improved
ACEI
CHF
BIPAP
IV lasix
Cr 450
D/C ACEI
Refused dialysis
PC CONSULT OW

9. PC Consult Goals are palliative in focus
No hospitalization
No invasive intervention (PICC, Dialysis)
But, he is going to get better!
Goals may change again

10. At home: Furosemide 80 mg po bid Hydralazine 100 mg qid
Isosorbide dinitrate 30 mg tid
Metolozone tabs at home prn
Spironolactone and bb held still
No ACEI due to renal dysfunction

11. What to do if he gets symptoms?

12. Case Study # 2: Mrs. GI 84 yr old woman Aortic Stenosis
COPD, Colon CA resected 2006
A fib (warfarin)
Hypertension

13. Mrs. GI Nov 2013 admission Sept 2012 admission Aug 2013 admission
Jan admission
Mar admission
Feb 2014 admission
July 2011 ER
Lasix 40 mg bid
IV lasix
D/C on Lasix 80 PO bid
IV lasix
D/C on Lasix 120 PO bid
IV lasix
D/C on Lasix 120 TID
PC Consult
No TLCPC
GI Bleed
GI Bleed
Lasix po now 120 mg QID
IV lasix
Metolozone
PC Consult
TLCPC now
Case 2

14. Mrs. GI Palliative Care Consult
Lives with daughter
Functionally same over past 6 months
Bed – chair, very little ambulation
Understanding of illness very good

15. Mrs. GI: Palliative Care Consult
Goals:
Try and stop bleeding
DNR
Home as much as possible
Very keen to have team involved now

16. Mrs. GI: Palliative Care Consult
Symptoms:
SOB with minimal exertion
PND – doesn’t sleep much
Dysmotility symptoms
Anorexia
?Depressed

17. Plan Home oxygen Metoclopromide trial Opioids discussed
Palliative MD to see at home
Family MD doing weekly labs

18. What to do if she gets worse?
Bleeding?
CHF?
Heyde’s syndrome: Mild Von Willebrand’s disease as VW factor breakdown as it is a large protein and may get broken by aortic valve damage
Replace the valve, bleeding stops

19. Case study: Mr. JB 79 yr old male Dilated cardiomyopathy
Angiodysplasia
Lives with his wife (not well supported)

20. Home, DNR, ICD deactivated
Mr. JB
Oct Clinic
Nov 2013 Admission
Nov 2013 Admission
Jan admission
Oct 2013 Clinic
Lasix 80 PO bid
Lasix 120 bid
Metolozone 2.5 mg OD MWF
GI bleed
IV lasix
Dobutamine
D/C HOME
Goals active
PC Consult
Goals shifting
Home, DNR, ICD deactivated
PCU Back-up
Case 2

21. Learning Objective #1: Basics of HF
Pathophysiology

22. Pathophysiology
Sarah J Goodlin, J of Am Coll of Cardiology, 2009

23. Neuro-Hormonal Activation
MUSCLE DAMAGE
End organ hypoperfusion
Renal dysfunction
Confusion
Fatigue
GI dysfunction
Edema
Ascites
Anorexia
Early satiety
RUQ pain
Dyspnea
LV Dysfunction
Muscle Remodelling
Neuro-Hormonal Activation
RAAS
Norepinephrine
SNS
TNF α
Inflammatory
Oxidative stress
Hypertrophy
Fibrosis
Apotosis

24. NYHA CLASS Class I: Symptoms with more than ordinary activity
Class II: Symptoms with ordinary activity
Class III: Symptoms with minimal activity
Class IIIa: No Dyspnea at rest
Class IIIb: Recent Dyspnea at rest
Class IV: Symptoms at rest

25. AHA CLASS – ACC/AHA
A - Risk factor or predisposition (no structural disease)
B - Structural disease, no symptoms
C - Disease and symptoms at any time
D - Disease and requires advanced treatment (ICD, LVAD)

26. Figure 1. Stages in the evolution of HF and recommended therapy by stage.
Committee Members et al. Circulation. 2001;104:
Copyright © American Heart Association, Inc. All rights reserved.

27. New Categories: HFrEF EF < 50% HFpEF EF normal Challenging
Similar morbidity and mortality
Older age, women, HTN

28. Typical medical treatments
B Blockers
ACE I/ARB
Diuretics
Loop
Thiazide
Aldosterone blockers
Nitrates
Salt and fluid restriction

29. LV Dysfunction Neuro-Hormonal Axis Muscle Remodelling MUSCLE DAMAGE
End organ hypoperfusion
Renal dysfunction
Confusion
Fatigue
GI dysfunction
Symptoms
Edema
Ascites
Anorexia
Early satiety
RUQ pain
Dyspnea
LV Dysfunction
Muscle Remodelling
Neuro-Hormonal Axis
Beta blockers
ACE Inhibitors
RAAS
Norepinephrine
SNS
TNF α
Inflammatory
Na and Water retention
Hypertrophy
Oxidative stress
Fibrosis
Apotosis

30. Other treatments
Cardiac Resynchronization Therapy Implantable Cardiac Defibrillators (ICDs) LVAD Left Ventricular Assistance Device Transplant

31. Challenges to Traditional Palliative Care Model
Learning Objective #2
Challenges to Traditional Palliative Care Model

32. Trajectory: Oncology

33. Goodlin, SJ Am Coll Cardiol 2009;54:386–96

34. A Tale of Two Illnesses Cancer Heart Failure Chemotherapy
Often a transition point
Public awareness that cancer can cause death
Investigations “show” progression
Understanding variable
Goals of care
HF medications continue
No transition points
Little awareness of prognosis in HF
Imaging “hidden”
Poor patient/family understanding
“I have a weak heart”
Goals variable

35. Resource issues
Limited availability of advanced therapies outside acute hospital setting
Parenteral diuretics
Inotropes

36. Prognostication:
Prognostication underlies the infrastructure in palliative care But, in HF – prognostication defies us!

37. More than 100 variables have been associated with mortality and re- hospitalization in heart failure
General Age, diabetes, sex, weight (BMI), etiology of HF, comorbidities (COPD, cirrhosis) Laboratory markers Na, creatinine (and eGFR), urea, BUN, Hgb, % lymphocytes, uric acid Low HDL Insulin resistance Urine Abluminuria NGAL - neutrophil gelatinase associated lipocalin Biomarkers BNP, NT pro BNP, troponin, CRP, cystatin C, GDF-15 (growth differentiation factor), serum cortisol, TNF, ET, NE, midregional-pro- adrenomedullin (MR-proADM), pro-apoptotic protein apoptosis-stimulating fragment (FAS) Medication Intolerance to ACEI, diuretic dose FC IV Especially if sustained > 90 days 6 minute walk
Cardiopulmonary markers Peak VO2, % predicted, VE/VCO2, AT, workload, systolic BP < 130, HR recovery Clinical Exam markers BP (admission and discharge), heart rate, JVP, +S3, cachexia Depression Obstructive sleep apnea Echo parameters EF, chamber size (LV, LA, RA), sphericity, RNA RVEF, LVEF Recurrent hospitalizations ECG IVCD Hemodynamic markers PA pressures, CO, CI, MVO2 Endomyocardial biopsies Microarrays transcriptomic biomarkers Marital status
WHAT SHOULD YOU DO ?????
There are a number of predictors of prognosis in heart failure. These are a few of the specific predictors associated with extremely poor outcomes in advanced heart failure : a low serum sodium of less than 132, a high serum creatinine, intolerance to angiotensin converting enzyme inhibitors, high brain naturietic peptide levels, advanced functional class (I.e. FC IV), especially if this is sustained greater than 90 days, low systolic blood pressure, low ejection fraction and patients with recurrent hospitalizations.

38. Consistent Predictors
Increasing age Lower ejection fraction Higher NYHA class
Hyponatremia Elevated and rising BUN Repeated admissions to hospital
From Selby, D. 2008

39. Another way to think about it:
Significant cardiac dysfunction with:
Marked dyspnea and fatigue
End organ hypo-perfusion at rest
Symptoms with minimal exertion
Maximal medical therapy
AHA Stage D – refractory symptoms
Goodlin et al, Journal of Cardiac Failure Vol. 10 No
Hunt SA et al JACC 2001;38:2101–13.

40. Yet another way:
Assess knowledge, educational needs, goals and symptoms
Provide care based on:
FUNCTION and NEEDS, not prognosis

41. Because we know: Palliative Care strongly advocated
ACC/AHA Practice Guidelines
European Society of Cardiology
Heart Failure Society of America
Canadian Cardiovascular Society
Needs well-documented in many studies
Palliative Care specialists often not involved

42. Care should be delivered by a multi-discipline team consisting of:
Overall, remember
Care should be delivered by a multi-discipline team consisting of:
HF team – cardiologist/HF Clinic
Primary care
Palliative care specialist
Home care team if appropriate
Need to ensure good communication and coordination among team members
Clear roles (Who is managing the patient?)
Leah**
** Added the last bullet here

43. Learning Objective #3:
Assessment and Management of End Stage Heart Failure: The Role of Palliative Care

44. Palliative Care Interventions
Assess patient and family understanding
Assess and treat symptoms
Maximize HF treatments - cardiologist
Assess the psychosocial stressors
Determine patient’s goals of care
Assist with decision-making and advanced care planning
Education throughout

45. 1. Patient and Family Understanding
Basic skills we already have… Often requires education Best done with family members

46. 2. Assess and Treat Symptoms
Dyspnea Depression Anxiety Insomnia
Fatigue
Nausea
Pain

47. Can use the ESAS

48. 2. Assess and Treat Symptoms
Dyspnea Depression Anxiety Insomnia
Fatigue
Nausea
Pain

49. Dyspnea
Rule out reversible cause if appropriate NSAID? infection? Pizza? Continue HF medications if possible Diuresis if congested, allow BUN/Cr to rise Titrate O2 if symptomatically helpful Non-pharmacologic management Opioids appropriate in this population

50. Continue HF medications
Evidence exists for use of:
 ACE Inhibitor – continue to use
 ARB – continue to use
 B Blocker – continue to use
 Aldosterone blocker – continue to use
Try to keep in this patient population

51. Maximize HF treatments
Assess for sleep disorder if appropriate
CPAP
Improves fatigue, social function, vitality, mood
Salt restriction
Engage HF clinic or cardiologist for assistance if necessary
Heather

52. Diuresis escalation: No Guidelines
Double oral loop diuretic
Change frequency
Monitor symptoms, weight daily (CCAC)
If no improvement or worse, add 2nd diuretic
HCTZ or Metolozone 30 mins prior
K supp if good urine output
If no improvement, consider SC (off label) or IV dosing or ED

53. Home diuretic protocol
For patients whose goals of care are to avoid hospitalization and invasive testing and monitoring
Can work with CCAC to develop a home-based protocol

54. DRAFT

55.  
DRAFT    

56. Add-on diuretics – 30 mins prior
HCTZ – 12.5 mg 30 mins prior to furosemide
Metolozone 2.5 – 5.0 mg OD
Go slow – they are quite effective

57. Oxygen
May be helpful
If not able to do sleep study, can try nocturnal oxygen

58. Use opioids for dyspnea
If diuresis not sufficient, opioids are effective in this population Low dose, prn for intermittent dyspnea or pain e.g. MS 2.5 mg po q 1 hr prn e.g. Hydromorphone 0.2 – 0.5 mg q 1 hr prn
The possible mechanisms of action include reduction in central perception of breathlessness (similar to reduced central perception of pain), reduction in anxiety, reduction in sensitivity to hypercapnoea, reduced oxygen consumption and improvement in cardiovascular function.
Dypnea comes from respiratory drive in bs…inputs from chemoreceptor (medulaa, carotids) then sends out stimulus to generate a breath. As demand for breathing goes up, it sends signals to increase recruits more respiratory effect; Then, bs sends CC to cortex and tell it what is asking Resp muscles to do. Corext also gets afferents Inputs from airways: flow, stretch receptors in lung and receptors from muscle, ergo receptor in lung tell brain that you are fatiguing. Cortex then collects all this to figure out effectiveness…looking for a match…If there is a match, even if it one where you are inc rr, but the effectiveness is there, then you might not even feel SOB… When there is a mismatch
Cortex gets inputs from limbic, dosolateral prefontal cortex – so mood, anxiety, etc add inot
Neuromechanical dissociation… mild mismatch – not quite seeing what it needs, brain will subtley reduce metabolism…If severe, you get a panic response…
Opioids decrease sensitivity which decreases panic response which improves ventilatory efficiency – more anxiety

59. Depression
Common – assess for it SSRIs recommended

60. Insomnia - Multifactorial
May be related to anxiety from dyspnea
Ensure good education re: dyspnea management

61. Fatigue Volume overload Myopathy and Cachexia
Neurohormonal abnormalities
Catabolism due to inflammatory mediators
Sleep-disordered breathing
Pain (>70%)
Depression (60%)
Comorbidities
Circulation 1995;91:559 – 61
Am J Crit Care 2008;17:124 –32
J R Coll Phys London 1996;30:325–8

62. Fatigue
Manage comorbid reasons for fatigue, then Can use methylphenidate – monitor HR and BP for tachycardia, hypotension, arrhythmias

63. Nausea
Gastroparesis Intestinal edema Reduced intestinal blood flow Hepatic congestion Try metoclopramide – consider s/c route Avoid dexamethasone

64. Pain
Common in this population Etiology not well studied Multiple sources likely Tylenol for mild pain Opioid for moderate to severe pain Avoid NSAIDs (worsening renal status)

65. Chest Pain
Nitroglycerin sublingual (as usual) x 3 If not effective, fentanyl sublingual 25 – 50 ucg x 3 q 20 mins If not effective, add s/c hydromorphone If pain frequently, consider a standing dose of opioid

66. Hypotension If symptomatic hypotension (presyncope):
Don’t change if low BP and no symptoms
Try changing timing of medications
give at night; stagger doses
If need to decrease or eliminate for symptomatic hypotension, start with:
CCB  alpha blocker  nitrate  hydralazine  BBlocker  aldosterone antagonist ACEI  ARB
Stagger timing of medications – stagger by a couple of hours
Use nitrates at night

67. Assess Psychosocial Burden
Similar to the assessment for all our patients…
Strachan P, Ross H et al. Can J Cardiol 2009;25:

68. Major concerns of patients
Psychosocial Burden
Caregiver burden often high
Make use of multidisciplinary team to support patient and family
Major concerns of patients
Not to be a physical or emotional burden
To an adequate plan of care and health services available to look after you at home upon hospital discharge
Information communicated by doctor in an honest manner
James
** Added some points
Strachan P, Ross H et al. Can J Cardiol 2009;25:

69. Advanced Care Planning Speak Up Campaign ICDs
Objective 4:
Advanced Care Planning Speak Up Campaign ICDs

71. Advanced Care Planning
Similar to “typical” discussions except…
These patients often less involved in decision making than those with cancer;
Don’t associate symptoms with cardiac status;
History of recovery from exacerbations;
History of helpful admissions, unlike oncology;
Often need education first before goals clear
How to translates goals into action -
Harder to get HF care at home
BMJ 2002;325: 929–33
JAMA 1998;279:1709–14

72. Advanced Care Planning
More limited access to supports that depend on prognosis
Home Care
Home Palliative Care
Limited availability of advanced therapies outside acute hospital setting
Parenteral diuretics
Inotropes

73. Advanced Care Planning
Action plans for unforeseen events
“Things will not always go according to plan…”
Make sure the family is present
Family member concerns can be a major barrier to discussion
Refer to existing ACP resources
“Speak Up campaign”
Aleksova et al. [Abstract] CCC Toronto, October 2013
Arch Intern Med 2004;164:1999–2004

74. ICD Deactivation – Challenges
Deactivation rarely discussed with patients
<45% even after DNR
8% shocked within minutes of death
Patients perceive a dependence on ICD
Action, not omission
Am Heart J 2002;144:282–9
Ann Intern Med 2004;141:835-8
Mayo Clin Proc 2011;86:

75. ICD Deactivation - Pearls
Distinguish pacing from defibrillation
QOL will not improve
“I would recommend that…”
“People who benefit from ICDs are…”
“People who do NOT benefit from ICDs are…”
Emphasize ongoing care

76. ICD Deactivation
Contact ICD clinic for information about deactivation Think about this in advance of last hours Find out where magnets are kept

77. Summary
Today, we’ve tried to show you gaps and challenges And tried to start to help you bridge those gaps New and changing quickly…

78. References
Oxford Press. Supportive Care in Heart Failure. James Beattie and Sarah Goodlin Eds Canadian Cardiovascular Society HF Guidelines McKelvie et al. Can J Cardiol 2011;27:
** Added the CCS guidelines