End of life issues in advanced heart failure manalo palliative care

End of Life Issues in

Advanced Heart Failure

Maria Fidelis C. Manalo, MD, MSc.

Palliative Care

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

Efforts To Prolong My Husband’s Life Cost Him An Easy Death


“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.”

“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.”


“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/


“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.


• But this avoidance doesn’t change one undeniable truth: We all will die.

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

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

http://onlinelibrary.wiley.com/doi/10.1002/ejhf.151/full

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

http://onlinelibrary.wiley.com/doi/10.1002/ejhf.2014.16.issue-10/issuetoc







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.

http://onlinelibrary.wiley.com/doi/10.1002/ejhf.2014.16.issue-10/issuetoc







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.


• 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

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.


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.


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.


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.


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.


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.


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.


Symptom Control: Fatigue/Anorexia

• Avoid steroids and progestogens.


Symptom Control: Anxiety/Depression

• Where medication is necessary, SSRIs such as citalopram or sertraline, are recommended first line.

• Tricyclic antidepressants are avoided.


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


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.


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.


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

This is Palliative Care: “One life at a time”

https://www.youtube.com/watch?v=DxPk7ahoRZU

https://www.youtube.com/watch?v=DxPk7ahoRZU

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.

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.”

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

• 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

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

End of life issues in advanced heart failure manalo palliative care

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