Previously: Heart failure and palliative care (support therapy)

5 important topics are covered:

• another look at heart failure and at active therapy,
• a personal action plan,
• supportive care and help, in conjunction with an active therapy treatment,
• imminent end of life,
• end-of-life care.

Imminent end of life

When it is possible to assume that the patient is likely to have only a few months to live allows the patient and his family to be prepared adequately for a peaceful and dignified departure in the chosen healthcare facility or at home.

Imminent end-of-life signs:

• ongoing weight loss and lack of appetite,
• difficulty in swallowing, cough when eating,
• immobility,
• increased sleepiness,
• significant weakness and constant fatigue,
• falls,
• heart failure symptoms are beyond control,
• patient says he is exhausted, that he has had "enough".

The palliative phase of the treatment is intensified:

• when the patient no longer responds to traditional treatments or to "active treatment",
• when the patient does not want to go on living,
• when the patient reduces or stops taking his prescribed medications.

Fragile stability of patient

Unlike cancer, prognosis of chronic serious diseases such as heart failure is not as obvious.  Their development is relatively uneven going from stable periods to major crises.

Patients with severe heart failure are extremely fragile, although they can function reasonably well for extended periods of time despite important limitations.

An unexpected event such as a urinary tract infection, a simple cold or any other common infection people deal with easily can be a matter of serious concern for patients living with severe heart failure.

Everything should be discussed ahead of time

The "terminal crisis" may occur at any time. When the disease takes a step in that direction, it is important for the patient and his loved ones to be fully aware of the situation. The matter could be discussed with the attending healthcare professionals, as needed.

In other cases, more and more frequent hospitalizations, and for longer and longer periods of time, will be considered. Deep reflection will be given to things to come and to the investigations and aggressive medical therapy in place. The medical team is multidisciplinary, which means that everyone takes part in the discussion, including the patient, who is the primary focus of the discussion.

The nature of the therapy involved     

The discussion will bear on several issues. A descriptive list of the treatments to be given to the patient will be provided. The form will be filled out and signed, and will be included in the medical record of the patient; copy of the form will be kept at home. The treatments that the patient is willing to take are listed, stating their various aggressiveness levels, as required by his medical condition:

• cardiopulmonary resuscitation, that is to say the patient is giving consent to receiving electrical shocks, a lifesaving emergency procedure performed to restore the viable heart rythm of the patient, and to prevent him from  having to wear a breathing tube, eventually. That is what is meant when we refer to the different levels of care to be provided;
• advanced care. such as dialysis or other external support;
• if the patient has a defibrillator, should it be turned on to give him an electrical shock when he has an alarming lifethreatening arythmia episode?
• medically assisted death.            

There is no particular need to decide everything at the same time

It is important to remember that all the aforementioned decisions should not be made in haste.

Prior to making decisions on the above options, the patient will have a deep personal reflection and will discuss those crucial points with the people who are close to him, as well as with his healthcare professionals. Those interactions will help the patient in making his choice in the road to be travelled. Whatever decisions are made, they are not set in stone and may be discussed again at any time later on.

Although it is not necessary to decide everything at once, it is important to talk about those matters as, for some patients, palliative care means a progression toward optimized comfort; it is offered in conjunction with the usual heart failure therapy of the patient.

One has to be able to discuss those matters

Even now, unfortunately, more than half of heart failure patients are unable to have an informed discussion with their physicians regarding their medical condition and prognosis. Those patients have no say in the type of treatment they wish to have should an acute episode arise, nor whether they choose to be resuscitated or not, as the case may be.

And yet, what is more important than to show respect for a patient's wishes at the end of his life?

Switching off the defibrillator function on a pace-defibrilator

A number of heart failure patients wear a pacemaker. Some pacemakers are equipped with a special setting to monitor a potentially life-threatening arrhythmia (irregular heartbeat).

When this occurs, that particular setting delivers an electric shock to the heart to re-establish a normal heart rythm. This super-pacemaker is called defibrillator or pace-defibrillator.

When a patient is equipped with this type of device, but does not wish to receive cardiopulmonary resuscitation, an adjustment has to be made to his pacemaker or defibrillator. This is easily done by re-programming the device. The pacemaker remains in place and continues to function as usual. The patient should be made aware that he may at any time ask to switch that special setting to "On" or "Off".

Before replacing a pacemaker

When the battery of that device runs down, it needs to be replaced, obviously.  A discussion can be held at this time about the defibrillator "On" or "Off" setting. All aspects of the disease will be discussed, its impact on the quality of life of the patient and the damage caused to other organs, namely his kidneys and liver. The age of the patient will be considered as well.

A reflection will be initiated at an opportune time. Should the defibrillator option be rejected, and that cardiostimulation is necessary for the comfort of the person, a simple pacemaker is installed.

To be continu...