If someone is suffering in a terminal illness and wants to die, what options do they have to control their symptoms?
Patients with symptoms of severe pain or shortness of breath will often ask me: “if treatments to control my symptoms become less effective, what can be done so I won’t suffer when death approaches.” A few have even asked me to “give them something to help them die”.
The goal of medicine, and therefore hospice’s obligation, has always been to provide comfort and prevent suffering. No one wants to watch a loved one struggle at the end of life.
To achieve that goal, sometimes the only way we can help the 5% of patients whose symptoms remain uncontrolled, is through an “option of last resort”—a state of sleep or unconsciousness called “Palliative Sedation”. (This is NOT Physician Assisted Suicide – I’ll discuss that next time.)
Palliative Sedation can range from a light drowsiness to a deep sleep and can be temporary or ‘permanent’, all depending on how much relief the patient obtains. When extraordinary doses of pain killers, etc are not helping, we can use a sedative like Phenobarbital, starting with a small dose which allows the patient to awaken after a few hours and hopefully be improved. Unfortunately, that approach doesn’t always help (the pain or shortness of breath isn’t better) and therefore to keep a patient comfortable, the dose has to be increased and they remain asleep until death occurs.
Ethically, this is known as the Principle of Double Effect and was approved by the US Supreme Court in 1997: our intent is to relieve suffering and provide comfort, but, in doing so, the treatment may unintentionally result in death.
Everyone wants a peaceful and dignified death, and assurance that their hospice will be there for them if a crisis occurs at the end of life.