I recently lost a close family member to cancer. She was old, she had been ill a long time; it still hurts. But in her dying, she made some wise choices. She was a very bright woman, and retained her mental capacities right up until the end. This gave her the opportunity to decide how she would approach death. She chose to enroll in hospice.
Hospice is widely misunderstood, partly because of the way we misunderstand death in the U.S. Instead of an inevitable part of life, death here is seen as an enemy to be fought at all costs, no matter the futility. Intensive care units, which were designed to care for people with a severe but potentially curable illness are full of the incurable—people on ventilators who will never breathe on their own again, who will never have a significant interpersonal interaction again.
Some of this is due to unrealistic expectations of family members, and some is due to physicians either failing to address end of life issues, or wanting to “try just a little bit more”. Either way, a lot of unnecessary suffering occurs near the end of life.
The HIV epidemic brought a revolution in end-of-life care to the U.S. Early in the epidemic, AIDS was universally deadly, and the deaths often happened badly. People would end up in the hospital, surrounded by strangers, with their closest friends unable to visit because of unconventional relationships (i.e. most were gay and their partners were shut out by the system). AIDS patients often died gasping for breath from pneumonia, had ceaseless diarrhea, blindness, and delirium. It was an awful death.
Until folks started reinventing the concept of hospice, initially in networks of volunteers. Patients would stay home, cared for by friends and volunteers, with medications given to ease discomfort.
Today, palliative care and hospice are vigorous specialties. They have become more widely accepted by patients, but misconceptions still exist.
Hospice care is aggressive, but not in the same way as standard medical care. The starting assumption is that a disease is incurable and the patient is going to die of that disease. Since the disease is ultimately going to win, the only battle left is the symptoms. Pain, breathing difficulties, loneliness, grief are all treated aggressively by a multidisciplinary team that usually includes doctors, nurses, clergy, and others.
I’ve been treating my own patients at the end of life for a number of years. Not all internists have the experience for this, but I hate to turn a patient over to a stranger when they need me the most.
I just returned from the bedside of a patient of mine. She took a bad turn a few days ago, and she and her family elected to enroll in hospice rather than engaging in a painful, futile battle on a ventilator. As is common, once she decided on hospice, she perked up a bit and was able to say goodbye to her family. Now she’s lying in bed comfortably. She probably won’t last the day. Her family is pleased that she is comfortable, and while they are appropriately sad, they are satisfied that she is receiving the best treatment possible.
As an internist, it’s actually quite rare to receive thank you notes from patients. You may pull them back from the brink of death, maintain their health, counsel them in times of need, but a card isn’t part of the thanks. Unless someone dies. I have a file full of thank you notes from families whose loved ones I’ve cared for at the end of life.
Dying is an important part of life; it’s an opportunity to help someone remain peaceful and comfortable as an inevitable end approaches. It’s also a time when you can make someone more miserable than they could every have imagined. When a fatal disease is diagnosed, patients and their families need close guidance to assure as much as possible that they follow the path of peace and comfort, rather than pain and fear.