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End of Life

Heart Patients: Should they not also have end-of-life guidance?

Recently, a friend of mine found himself in the hospital diagnosed with congestive heart failure. Since the only treatment for this condition is a heart transplant and since my friend is 77 years old, this was out of the question. Doctors told him his heart was failing and to go home and get his affairs in order. The end was coming.
My friend was very athletic when he was young and always maintained a very good weight and continued to actively exercise in his later years. His downfall was fast food. Couldn’t stay away from it. He would go for a run to McDonalds and then have a burger, fries and coke. But people like him are raising a new dilemma for doctors.
Heart disease once killed ruthlessly and quickly; patients like my friend succumbed to heart attacks and sudden death from cardiac arrest. But with improved medical care and implanted devices that bolster the heart, a growing number of heart patients survive for years, even decades, coping with a chronic, progressive condition punctuated by crises and hospitalizations.
This disease is called heart failure—their weekend heart cannot pump enough blood to supply the body’s needs. The number of Canadians with heart failure increased to almost 1 million in 2011-2014 from just over 500,000 in 2009-2012 according to the Canadian Heart Association.
More than 10 per cent of those older than 80 have heart failure, and more patients are living longer with advanced disease. Even as the death rates from heart attacks are falling, the figure for heart failure is rising.
Yet there are no widely accepted guidelines for dealing with these patients as they near death. Cancer specialists regularly move their patients to hospice at the end of their life, for instance, but few cardiologists even think of it. Heart patients account for just 15 per cent of hospice deaths, while cancer patients make up half, according to a recent study.
That paper, published in the Journal of the American College of Cardiology, reviewed a number of ways in which heart patients are let down at the end of their life. Implanted defibrillators often remain activated until the very end, even for those in hospice.
A fifth of heart patients with defibrillators get shocked by them ion the last few weeks of their life, and 8 per cent of them get shocked minutes before dying. Most patients are never told that they can ask for that defibrillator to be turned off.
Personally, I don’t see how getting shocks at the end of life is helping patients live longer or better. Many people have “Do Not Resuscitate” instructions. Do we have to add “Do Not Defibrillate”?
Experts often focus on the strides made in preventing and treating heart disease. Its incidence has declined 70 per cent in the last 50 years. People have heart attacks later in life than they used to, are more likely to survive them and often live for years afterward with few or so symptoms.
Still, cardiologists and their patients should be discussing end-of-life options and palliative care earlier in the course of heart failure. Oncologists are far ahead in this area and cardiologists should be looking at their example.
The problem is cardiologists thrive on the dramatic saving of lives; the heart transplants, the bi-passes, the valve replacements and the implanted pacemaker. They rescue patients; bring them back from the brink of death.
End-of-life is not their focus. Neither do they spend much time wondering what some of their patients may experience in the future. Physicians who specialize in cardiology do not want to deal with death and dying. This area is left to oncologists and emergency room physicians.
End stage heart failure is very difficult to prepare for. Instead of having a steady decline, there are peaks and valleys, but each peak is lower than the one before. And of course doctors do not tell the patient what to expect.
A patient with cancer will experience a fairly predictable decline. They will become more symptomatic and go back to the hospital more frequently. Once this starts it will continue until they die. Most people can see the end coming.
But patients with end-stage heart failure are more likely to have wild swings veering from feeling better to being terribly ill. It is not only confusing to the patient but also confusing to their provider and their physician. Are they actually dying or can we rescue them from a particular episode of worsening. As the patient seesaws between good periods and bad, it is very difficult for their physician to make the call.
Another patient I know, a 75 year old man, has an implanted defibrillator, and is heart is weakening, pumping progressively less blood. His life is sustained with his implant device and a large assortment of medications and this is when a physician should talk to the patient about the end of his life. The patient still feels pretty good, but he knows that things will not get better and his day is going to come.
He has been living with heart failure for over a decade and now his only medical option is an implantable pump and full-time home care. He told me he doesn’t want to go there. He wants to go to a nice quiet hospice and let himself go. If only his cardiologist would let him.