How to overcome barriers to Palliative Care … groups/Cardiology/How to overcome...1 How to overcome barriers to Palliative Care provision for patients with heart failure Dr. Piotr

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How to overcome barriers to

Palliative Care provision

for patients with heart failure

Dr. Piotr Sobanski

Prof. Dr. Bernd Alt-Epping

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When have you experienced

barriers in providing

Palliative Care for patients with heart failure?

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In industrial countries, cardiovascular disease contributes

to the majority of deaths (e.g., 41% in Germany)

1.6-times more patients die from c.v. disease than from cancer

Patients with congestive heart failure (CHF) NYHA IV are facing a

lifetime prognosis that is worse than for the majority of cancer

patients in incurable, metastasized stages, with a 2-year mortality

of 40% to 45% (absolute risk), depending on the underlying

diagnostic CHF criteria (“more malignant than cancer”)

Still, the vast majority of patients in specialized palliative care

institutions suffer from advanced cancer

Background

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A distinct symptom spectrum (Ostgathe 2010, etc.)

=> a traditional (pain-focused) PC approach will not work

Tiredness / weakness / fatigue

Resources

Non-linear disease trajectory

Specific ethical problems

Socialization – attitude – culture

Barriers to Palliative Care involvement in heart failure

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Patients with AIDS, cardiac disease and renal failure were found

to suffer from similar symptom patterns like patients with

advanced cancer, including pain, dyspnoea and fatigue

but:

Cardiac patients suffered more often from

- dyspnoea (40% vs. 29%)

- weakness (92.3% vs. 84.5%)

- tiredness (75.4% vs. 66.7%)

- disorientation/confusion (32.1% vs. 17.2%)

- had particular need for nursing and psychological support in the

activities of daily life

Solano 2006;

Ostgathe 2010; see also Pantilat 2004; Small 2009, Nordgren 2003, Janssen 2009, etc)

A distinct symptom spectrum …

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- is underestimated in prevalence + impact on QoL

(Vogelzang 1997)

- is frustrating to treat (Fischer 2017; Bower 2014)

- is commonly considered not to be an indication for PC

involvement

Resources





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Resources





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- difficulties in prognostication,

- unexpected decompensating periods

- requiring (and benefiting from!) acute EMS support




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- difficulties in prognostication,

- unexpected decompensating periods

- requiring (and benefiting from!) acute EMS support



Barriers to Palliative Care involvement in heart failure When is „palliative“

in patients with HF?

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when it comes to terminating interventional therapies



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Redefining palliative treatment goals

when prognostication is difficult

PallCare for pts. where heart transplantation is still discussed

Advance care and emergency procedure planning

Ethical aspects of disabeling devices

(external / assisting or integral / internalized? Substitutive or

replacing? Immediate death after deactivation or forgoing a mere

risk reducing therapy?, etc…)

Non-cardiac PallCare pts. with unexpected cardiac complications

The role of formal ethics consultation

Ethically relevant problems in heart failure patients

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Redefining palliative treatment goals

when prognostication is difficult

PallCare for pts. where heart transplantation is still discussed

Advance care and emergency procedure planning

Ethical aspects of disabeling devices

(external / assisting or integral / internalized? Substitutive or

replacing? Immediate death after deactivation or forgoing a mere

risk reducing therapy?, etc…)

Non-cardiac PallCare pts. with unexpected cardiac complications

The role of formal ethics consultation

Ethically relevant problems in heart failure patients

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- mechanistic / organ centred / disease centered approach

versus bio-psycho-social / holistic approach


Socialization – attitude – culture Fundamental conflict …

... between two approaches

Bio-psychosocial,

patient centered

Disease

centered

Palliative Medicine as a speciality

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The clinical perspective (and role models)

The “cultural” attitude perspective

The perspective of associations and societies

and their guidelines and policies

… and … your perspective

How to overcome barriers to palliative care provision

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A broader “symptom-and-needs perspective” in PC,

a less prognosis-dependent approach

More community-based, more outreaching PC (primary PC)

less in-patient treatment on PC units

More advance care planning and anticipating crises

Defining red flag indications for involvement of specialized PC

- refractory/complex symptoms

- repeated hospital readmissions

- complex and conflicted decision-making

- grief and complicated bereavement after patients’ death

PC in “stand-by” on-demand mode, ready to intervene rapidly

after periods of stability

How to overcome: the clinical perspective

How to overcome: the clinical perspective

- technical elements

Acknowledging technical elements, helps to avoid feeling

PC is doing nothing else than waiting for death

1. Symptom management - can be recognized as potentially

superior to classical disease centered approach

2. Prescribing opioids for analgesia, what usually bears fears

3. PC measures to alleviate breathlessness

4. Managing of mood disorders

5. Creating early measurable Q indicators would provide

understandable PC outcomes (the added value)*

Mizuno A. J Card. 2017; Hibbert D. Social Science & Medicine 2003

/ Mack, Arch Intern Med 2010 / Mack, J Clin Oncol, 2010 /

Wright, JAMA 2008 / Zhang, Arch Intern Med, 2009

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„Role models“ that proved to be beneficial (1)

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Advance Care Planning

its principles may be transferred to EoL decisions in cardiology

Proved to be effective:

- significantly less “aggressive” therapies at EoL

- better QoL scores

- earlier hospice care

- higher rates of preference oriented therapy

- less costs (higher costs were associated with worse QoL

Mack, J Clin Oncol 2012 / Mack, Arch Intern Med 2010 / Mack, J Clin Oncol, 2010 /

Wright, JAMA 2008 / Zhang, Arch Intern Med, 2009

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Impact of PC consultations on patient care

Cardiologist’s rating PC physician’s rating

No impact 0 0

Minimal impact 0 5%

Moderate impact 30% 15%

Significant impact 70% 80%

Schwarz E, JPM 2012

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Multidisciplinarity

Communication

Training

How to overcome: the cultural / attitude perspective

Implementing SPC in the cardiology

is like entering of a new terrain

❖ it is reasonable getting to known rules, habits and the

language of this new field in advance

but as well

❖ to reflect own rules, habit and language, and what is

welcomed by the other partners to build a dialog

All is about understanding of roles, respecting expertise

and ethos of professional mission/values/identity

from both partners and own perspectives

Multidisciplinarity: factors that facilitate cooperation

❖ coordination of cooperation

❖ communication with other providers

❖ integration in existing programs

❖ documentation of evidence of improving QoL

without increasing health care costs

Bekelman DB, JPallMed 2016

Incoherence of PC with orthodox medicine

Technical vs. indeterminate components of care

❖ PC focuses on holistic/psychosocial issues, as on key

components of PC.

❖ Classical („orthodox”) medicine prizes science and

rationality not these „indeterminate” holistic components.

❖ The technical components of PC can facilitate the dialog,

but the holistic, strengthen divergences and boundaries

Important misunderstandings with respect to PC

❖ referral criteria for PC are understood to be based on a

categorisation of patient as being beyond the help

❖ palliative treatment (almost) the same as in people not

being terminal (lack of easy recognisable symbolic step

„stopping chemotherapy”)

❖ symptom relief is what cardiologists and GP are always

doing …. and the psychosocial, ethical and spiritual

issues are not noticed

Hanratty B., BMJ 2002

Improvement of communication

between PC specialists and other disciplines …

❖ … can be preventive against burnout among PC

clinicians (especially working full time in hospices) -

burnout rate up to 62%*

❖ … can be preventive against burnout and improve self-

care among cardiological members of Heart Teams

implanting LVADs

*Kavalieratos D., JPSM 2017 ** Goldstein N, Circ. 2011

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…to improve their clinical status, functional capacity and quality of life,

prevent hospital admission and reduce mortality.

…to relieve symptoms and signs, prevent hospital admission and improve

survival.

… to bring about a reduction of mortality and morbidity. … for many patients

… the ability to lead an independent life, freedom from excessively unpleasant

symptoms, and avoidance of admission to hospital are goals which on occasion

may be equivalent to the desire to maximise the duration of life.

2012

2008

2016

ESC Guidelines for the diagnosis and treatment of HF

objectives in management of HF

ACC/AHA Guideline

The understanding of PC in ESC Guidelines 2016

A decision to alter

the focus of care

from modifying

disease

progression to

optimising quality of

life should be made

in discussion with

the patient,

cardiologist, nurse

and general

practitioner.

Allen LA, Circulation 2012

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Discordance between guidelines and real life in cardiology

Over half of US cardiologists recommend care that is discordant

with ACC/AHA guideline for HF, missing out elements of PC

(communication about prognosis, ACP, care coordination and

symptom control) in patients with late stage HF

The ratio (inversely proportional) between PC and intense medical

care in people with advanced HF varies between regions

suggesting local practice patterns matter

How to overcome: the perspective of associations

and societies and their guidelines and policies

Matlock D.D., JPM 2010; paper describes survey performed in 2004

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Thank you

for your contributions and your attention!

[email protected]

[email protected]

How to overcome barriers to Palliative Care … groups/Cardiology/How to overcome...1 How to overcome barriers to Palliative Care provision for patients with heart failure Dr. Piotr

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