Why aren’t countries accountable to commitment on end of life (#EOL) care for vulnerable people? For lack of know-how. This presentation aims to teach cardiologists how to provide good palliative care to their patietnts.

1. End of Life Issues in
Advanced Heart Failure
Maria Fidelis C. Manalo, MD, MSc.
Palliative Care

2. Meet Vic Johnson
• 81 year old ESRD patient with
notarized advanced directives:
Do not resuscitate. No
heroic measures. A gentle
and peaceful death, pain-
free and with dignity.
Please.
“When they asked my husband what his health
goals were, he ― who spent three days a week
hooked up to a kidney dialysis machine, had a
failing heart despite seven bypasses and was
unable to walk, dress himself, or get out of bed
without three people helping ― told them he
wanted to go home. The health care team
wrote it down, as if it were a legitimate option.
A few days later, his doctors said he needed an
emergency five-hour colon surgery to rid his
body of sepsis.
Buoyed by a false sense of hope about going
home, he uttered the words that are music to
the medical establishment’s ears: “I want to
live.”
- Ann Brenoff, The Huffington Post

3. Efforts To Prolong My Husband’s Life Cost Him
An Easy Death
- Ann Brenoff, The Huffington Post
“In the last 24 hours of his life, my husband ― lucid and alert ― had the following done to
him: An IV was stuck in his jugular vein when another vein couldn’t be found. He was rushed
by ambulance to the emergency room, where he spent seven hours before being admitted
to the ICU. He was treated for bedsores on his back, his behind and his legs ― all developed
in a nursing home with a staff that failed to turn him over to prevent them. His arm oozed
fluids through cracks in his skin that soaked his shirt and stunned our children. He had blood
drawn repeatedly through veins that nurses struggled to tap ― more try-and-fail needle
jabs than I could bear to witness. He was denied food and water for at least 24 hours as a
procedural precaution.
And the coup de grace: Once admitted to the ICU, he was rushed into a five-hour
emergency surgery that left him with a colostomy bag and on a ventilator. His heart stopped
for about a minute during the “pretty eventful” surgery, said the doctor who called me at
3:30 a.m. to tell me that my husband was in recovery and stable.
But my husband never woke up. He remained sedated until his heart beat for the final
time at 10:38 a.m. ― seven hours and tens of thousands of dollars later.”

4. “Prolonging death is not the same as extending life.
Death isn’t the boogeyman; turning the dying process
into a torturous experience is.”
• “I know that my husband was prodded to change his mind by a
medical system that charts death as a failure ― when in fact,
a good death should be considered an inalienable right.
• I don’t blame my husband one iota. I love him. I love that he wanted to come
home to us. He was brave and honest and true to the end.
• What he wasn’t was protected from a medical team trained to push him into
life-prolonging surgeries and procedures, even when those actions would
prolong pain and prevent a gentle death.
• And he certainly wasn’t protected by the worthless piece of paper [advance
medical directive] I had put so much stock in. A fat lot of good it did us. On Jan.
4, 2017, my husband died, and I threw his advance medical directive into the
fireplace. It worked better as a fire starter than it did as it was originally intended.
• I am bereft. I am grieving. And I am working hard to understand why medical
teams feel they must chase life so relentlessly.”
- Ann Brenoff, The Huffington Post

5. “End-of-life care is a pot of gold in
our modern medical system”
• According to a study by Banarto et al (2004), 30% of all Medicare
expenditures are attributed to the 5% of beneficiaries that die
each year, with 1/3 of that cost occurring in the last month of life.
• But when it comes to death and dying, this spending isn’t always
in the genuine best interest of the patient. A study by Zhang et al
(2009) published in the Archives of Internal Medicine asked if a
better quality of death occurs when end-of-life medical spending
rises. The short answer: Quite the opposite happens.
• The study, which considered factors like adequate management
of pain and symptoms, found that the less money that’s spent in
this time period on medical interventions, the better the death
experience was for the patient and their family.
- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2862687/
- Ann Brenoff, The Huffington Post

6. “Many health care practitioners have a view that
extending life, at any cost, is preferable to death.”
• They are trained to perform every possible diagnostic test, and treat
every symptom with whatever is in their arsenal.
• Some experts in palliative care go so far as to say the U.S. has
a “death-defying” culture. Slogans like “conquer cancer,” “cheat
death” and “beat the disease” shape our expectations.
• Education in palliative care is offered in nearly all U.S. medical
schools, but it is most often a brief portion of a course with a larger
focus.
• The average total instruction on death and dying for would-be
doctors is a mere 17 hours in the four-year curriculum, according to
one study.
- Ann Brenoff, The Huffington Post
• But this avoidance doesn’t change one undeniable truth:
We all will die.

7. What is Palliative Care?
• Palliative care is an approach that improves the quality of life of
patients and their families facing the problem 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 - WHO.
- Watson et al, Palliative Adult Network Guidelines, 2016

8. Palliative care for heart failure
Time to move beyond treating and curing to
improving the end of life
• Most of the usually elderly patients with heart failure have
short lives remaining of extremely poor quality, punctuated by
frequent admissions to hospital.
• They often suffer dyspnea, pain, confusion, anxiety, and
depression during their last days of life.
• Most of them would prefer “comfort care” and do not wish
for active resuscitation.
• Some would even prefer death.
• The growing clamor for a better experience of the end of life
and the extension of palliative care services to patients with
heart failure is therefore not surprising.
- Stuart and McMurray, BMJ. 2002

9. European Journal of Heart Failure
Volume 16, Issue 10, pages 1142-1151, 26 AUG 2014 DOI: 10.1002/ejhf.151
http://onlinelibrary.wiley.com/doi/10.1002/ejhf.151/full#ejhf151-fig-0001
Effects of person‐centred and integrated chronic heart
failure and palliative home care.
PREFER: a randomized controlled study

10. Effects of person‐centred and integrated chronic heart
failure and palliative home care.
PREFER: a randomized controlled study
European Journal of Heart Failure
Volume 16, Issue 10, pages 1142-1151, 26 AUG 2014 DOI: 10.1002/ejhf.151
http://onlinelibrary.wiley.com/doi/10.1002/ejhf.151/full#ejhf151-fig-0002
• From January 2011 to October 2012,
36 (26 males, 10 females, mean age
81.9 years) patients with chronic
heart failure (NYHA class III–IV) were
randomized to PREFER and 36 (25
males, 11 females, mean age
76.6 years) to the control group at a
single centre.
• Prospective assessments were made
at 1, 3, and 6 months using the
Edmonton Symptom Assessment
Scale, Euro Qol, Kansas City
Cardiomyopathy Questionnaire, and
rehospitalizations.

11. Person-centered care combined with active heart failure and palliative
care at home has the potential to improve quality of life and morbidity
substantially in patients with severe chronic heart failure.
• Between-group analysis revealed that patients receiving PREFER had
improved HRQL compared with controls (57.6 ± 19.2 vs. 48.5 ± 24.4, age-
adjusted P-value = 0.05).
• Nausea was improved in the PREFER group (2.4 ± 2.7 vs. 1.7 ± 1.7,
P = 0.02).
• Total symptom burden, self-efficacy, and quality of life improved in the
PREFER group by 18% (P = 0.035), 17% (P = 0.041), and 24% (P = 0.047),
respectively.
• NYHA class improved in 11 of the 28 (39%) PREFER patients compared
with 3 of the 29 (10%) control patients (P = 0.015).
• Fifteen rehospitalizations (103 days) occurred in the PREFER group,
compared with 53 (305 days) in the control group.
- Brännström, M. and Boman, K. (2014), Effects of person-centred and integrated chronic heart failure and palliative home
care. PREFER: a randomized controlled study. Eur J Heart Fail, 16: 1142–1151. doi:10.1002/ejhf.151.

12. • Proactive, thoughtful advance planning and effective
communication about patient goals and wishes supports
patient autonomy while avoiding harm.
• Such communication challenges offer a unique opportunity
for professionals of various disciplines to collaborate to
improve the lives of their patients.
• Another opportunity for collaboration between disciplines is
the complex informed consent and ongoing care processes for
HF patients who are treated with implantable devices.
Treatment of Advanced Heart Failure:
Palliative Care and End-of-Life Issues
- Tanner et al. Congest Heart Fail, 2011

13. Preparedness Planning
• Planning for adverse events and the end of life, formulated
as "preparedness planning," can be integrated into HF care
early in illness.
• Discuss diagnosis, prognosis, uncertainty
• Discuss advance care planning and resuscitation preferences
• Discussions that acknowledge the uncertainty of HF course
and length of life and incorporate patient and family goals
and values facilitates this planning.
• Clear processes for weighing potential benefits and
burdens of interventions and therapies should accompany
decision-making.
- Tanner et al. Congest Heart Fail, 2011

14. Informed Decision-Making and
Devices in AHF
• Implantable devices are increasingly prevalent in patients with
AHF.
• Both at the time of implantation and during the course of care
for patients with devices, there are opportunities to engage
patients in participatory or informed decision-making.
• Truly informed consent for an autonomous patient requires
discussing not only the risks, benefits, and reasons for an
intervention, but also all reasonable alternatives to the
intervention.
• Device implantation decision-making can acknowledge alternative
avenues of care to the device and identify situations in which the
device might be deactivated in the future.
• End-of-life care providers must work collaboratively with
electrophysiologists, cardiologists, and device manufacturers to
ensure appropriate management of these devices at the end of life.
- Tanner et al. Congest Heart Fail, 2011

15. Symptom Control:
Breathlessness
• Ensure cardiac medications and devices have been optimized.
• Consider non-pharmacological approaches used in respiratory
rehabilitation and lung cancer e.g. education, hand-held fan,
relaxation, breathing techniques, and pacing of activities.
• Exercise training programs and stress reduction programs may be
helpful for some individuals.
• Low doses of opioids such as morphine 2.5 – 5mg 4 hourly can
improve breathlessness (Level II). Lower doses or an alternative
opioid will be required when renal dysfunction coexists.
- Watson et al, Palliative Adult Network Guidelines, 2016

16. Symptom Control:
Pain Management
• Over 50% of patients diagnosed with heart failure have also
been shown to have pain; the pharmacological
management of any pain, will need to account for their
underlying condition.
• Route of administration needs extra consideration as drug
absorption may be altered in heart failure e.g. transdermal
and oral routes may be compromised.
– There is a theoretical risk that drug absorption from transdermal
patches may be reduced in patients with significant peripheral
edema; a non-edematous area should be used in preference.
- Watson et al, Palliative Adult Network Guidelines, 2016

17. NSAIDs / COX-2 Inhibitors
• NSAIDs are contraindicated in patients with advanced heart
failure due to the risk of fluid retention.
• Additionally, COX-II selective inhibitors are associated with
an increased risk of thrombotic cardiovascular events, in
the order of 3/1000 users per year, most notably stroke and
myocardial infarction.
• They are therefore relatively contraindicated in patients
with established ischemic heart disease, cerebrovascular
disease or peripheral vascular disease although this
increased risk will need to be balanced against delivery of
adequate pain control, particularly at the end of life.
- Watson et al, Palliative Adult Network Guidelines, 2016

18. Symptom Control:
Neuropathic Pain
• Amitriptyline is widely acknowledged to cause arrhythmias, particularly at higher
doses.
• Pregabalin has recently been reported to precipitate arrhythmias and congestive
cardiac failure, and should be used with caution.
• Carbamazepine is associated with atrioventricular conduction abnormalities and is
contraindicated in AV conduction abnormalities, unless the patient has a pacemaker.
• Ketamine should be used with caution in patients with heart disease, particularly
ischemic heart disease, previous arrhythmias and hypertension.
• Corticosteroids - the mineralocorticoid effect leads to salt and water retention which
may be clinically significant in patients with congestive cardiac failure.
• Dexamethasone should be used in preference to prednisolone due to its higher
glucocorticoid to mineralocorticoid ratio.
- Watson et al, Palliative Adult Network Guidelines, 2016

19. Symptom Control:
Nausea/Vomiting
• Avoid cyclizine - it can have detrimental hemodynamic effects in heart failure (level
V).
• Low-dose, short-term metoclopramide has been used first line, but needs care in
view of its CNS adverse effects and its potential to prolong the QTc interval.
• Domperidone is best avoided as it is known to prolong the QTc interval. QTc
prolonging drugs are associated with an increased risk of sudden death.
• Haloperidol and levomepromazine also need to be used with caution in
cardiovascular disease. Hypotension is a known side effect of levomepromazine in
particular and haloperidol can increase QTc interval. QTc prolonging drugs are
associated with an increased risk of sudden death.
• 5HT3 antagonists such as ondansetron should be used with caution as they also
may prolong the QTc interval and can cause electrolyte disturbances.
• Be aware of cardiac medications which can cause nausea e.g. digoxin,
spironolactone.
- Watson et al, Palliative Adult Network Guidelines, 2016

20. Symptom Control:
Fatigue/Anorexia
• Avoid steroids and progestogens.
- Watson et al,
Palliative Adult Network Guidelines, 2016

21. Symptom Control:
Anxiety/Depression
• Where medication is necessary, SSRIs such as
citalopram or sertraline, are recommended
first line.
• Tricyclic antidepressants are avoided.
- Watson et al,
Palliative Adult Network Guidelines, 2016

22. End-Of-Life Care
• Predicting death in heart failure patients remains challenging despite
the numerous prognostic indicators and models in existence.
• For some, death will be heralded by declining functional status,
worsening end-organ damage and increasing episodes of
decompensation despite optimum treatment.
• However there is also the risk of sudden death at all stages of the
disease.
• Handling this prognostic uncertainty is an important area for
healthcare professionals to be able to manage appropriately.
• When to involve specialist palliative care:
– CHF NYHA Stage III or IV
– Repeated hospital admissions with heart failure
– Difficult physical / psychological symptoms despite optimal therapy
- Watson et al, Palliative Adult Network Guidelines, 2016

23. Discontinuing Treatments
• As the end of life approaches, changes in
potential net gain will influence management:
– Review all medical therapies and investigations. When
prognosis is short, increasingly prioritize interventions
providing symptomatic relief rather than prognostic
benefit alone.
– Discuss and plan deactivation of an implantable
cardioverter defibrillator (ICD) in order to avoid any
chance of shocks during the dying phase.
• Discussing this at an early stage will avoid potential distress
in the dying phase to the patient and carers.
• Pacemakers will continue to function independently.
• Local policies and procedures should be followed.
- Watson et al, Palliative Adult Network Guidelines, 2016

24. End-of-Life Care in AHF
• In the dying phase, an Individualized End-of-Life Care Plan approach
should be adopted, using local/national guidance on the care of the
dying where available and appropriate.
• Specific symptom control issues during this phase may include
uncontrolled breathlessness and pulmonary edema.
• Although robust evidence is scarce, furosemide can be given
subcutaneously by injection or in a syringe driver when pulmonary
edema is present, or anticipated to be a problem. (Evidence Level II)
• Transdermal nitrates could also be considered.
• Opioids (using caution and recommended dose adjustments in
renal failure) and benzodiazepines are useful for terminal dyspnea.
- Watson et al, Palliative Adult Network Guidelines, 2016

25. Psychosocial and Spiritual Care
• Spiritual and existential distress are common throughout the
course of illness for HF patients and their families.
• Involvement of an interdisciplinary team, including social
work and chaplaincy or religious or spiritual leaders, are
important in addressing such distress.
• Additionally, cultural issues, which may influence the type of
end-of-life therapies desired and the most desirable location
of death, should be assessed and integrated into the plan of
care.
- Tanner, C. E., Fromme, E. K. and Goodlin, S. J.
Congestive Heart Failure, 2011

26. This is Palliative Care:
“One life at a time”
https://www.youtube.com/watch?v=DxPk7ahoRZU

27. Going back to Vic Johnson & his wife Anne
81 year old patient with ESRD, a
failing heart, and sepsis, and has
documented his wishes in a
notarized advanced directives:
Do not resuscitate.
No heroic measures.
A gentle and peaceful
death, pain-free and with
dignity. Please.

28. Discuss Prognosis & Preferred Place of Care:
Patient says “I want to live” & “I want to go home”
Step Example of Language to Use
Assess patient
perception/understanding;
“Tell me what you know about your current
condition.”
Relate prognosis in language
unlikely to be misunderstood.
“On top of your end-stage kidney disease, you have
advanced heart failure (HF), which means that your
heart is having trouble pumping blood throughout
your body. And now you have sepsis, which means
that the infection is in the blood and reaching major
organs, causing them to function insufficiently also.”
Correct Misperceptions;
Give honest prognostic
information while reinforcing
hope.
“The bad news is that end-stage renal disease, HF
and sepsis shorten people’s lives. At this point in
time, the treatments we have are no longer helping
you live longer without compromising the quality of
your life. The good news is that there is palliative
care to keep you comfortable in your preferred place
of care.”

29. Discuss Prognosis & Preferred Place of Care:
Patient says “I want to live” & “I want to go home”
Step Example of Language to Use
Acknowledge emotion
or fear
“This news would frighten or upset anyone.”
Empathize and
acknowledge emotions
“I can imagine this news is difficult for you and
your family.”
Reinforce commitment
to ongoing
treatment/care
“You mentioned you want to go home. We will
work with you to prepare you for discharge and
home care. Our palliative care doctor and nurses
will continue your care in your own home and
address your pain and other distressing symptoms
to keep you as comfortable as possible. Palliative
care or comfort care will allow you a gentle and
peaceful death, pain-free and with dignity, as you
wish, at home.”
- Tanner, C. E., Fromme, E. K. and Goodlin, S. J., Congestive Heart Failure, 2011

30. • Symptom management throughout the course of HF care is an ethical
obligation of all professionals caring for patients.
• A holistic mind-set is pivotal: adopt a palliative care approach to
physical, psychological, social, and spiritual needs.
• Proactive, thoughtful advance planning and effective communication
about patient goals and wishes supports patient autonomy while
avoiding harm.
• High-quality palliative and end-of-life care in HF must be the result of
collaboration between multiple disciplines and professionals across
all care settings.
- Tanner, C. E., Fromme, E. K. and Goodlin, S. J., Congestive Heart Failure, 2011
Palliative care for heart failure
Time to move beyond treating and curing to
improving the end of life

31. Why aren’t institutions & countries
accountable to commitment on
end of life (#EOL) care for vulnerable people?
Max Watson, MD
Palliative Adult Network Guidelines
Emmanuel Luyirika, MD
African Palliative Care Association: Faasi video
Session 562: Rethinking Care Toward the End of Life
December 14-19, 2016, Salzburg Austria