What is hospice care?
In every patient with Stage 4 metastatic disease, the risk of treatment needs to be balanced against the potential benefit. Eventually, sooner or later, there is no real benefit to continuing treatment, and we decide to stop it. But the disease doesn’t stop, and we still need to treat the ill effects it causes.
Hospice is a service that helps us take care of end stage symptoms. The goal shifts from treatment to comfort and symptom management. The goal is to provide services in their own comfort zone, without having to go to the Emergency Room or the Hospital for every new event. They provide nurses who come to the house and evaluate and advise, and communicate with the managing physician. They have chaplain services and volunteers who will sit with the patient and give the family and caregiver a break; pharmacy services which provide pain medicines and a variety of support equipment, including hospital beds and bedside commodes, oxygen equipment and suction machines.
Being referred to hospice does not imply impending death. It implies a shift in goals. Patients enroll not just with cancer, but also with end stage heart disease or lung disease, or other terminal illnesses.
Nurse visits can range from once a week as a status check to twice a day as the condition requires. They are a phone call away for any questions. And at the time of death, they are authorized to certify the death. In the United States, otherwise there is no way of getting the deceased person’s body to the funeral home and eventual burial/ cremation. The alternative is to call 911, get taken to the Emergency Room, then go to the morgue, spending hours at a time of grief, taking care of procedural issues.
A family friend’s grandmother was recently diagnosed with a pancreatic mass at the age of 94. The family wisely decided not to go down the path of further investigation and treatment. They signed on with Hospice, and she was pleasantly surprised that nothing was going to change in her living situation. Nurses would visit her and keep track of her medical situation, increasing their presence as the situation required.
For people who are ultimately unable to be cared at home, in some areas, there are residential facilities called Hospice Houses. They are a ‘home away from home”, with end of life care provided in a non- hospital setting.
When I was a resident, more than 20 years ago, most people in the United States did not have advance directives about end of life care. We ended up performing futile and sometimes painful procedures to “keep people alive”. Other cultures around the world had a less interventionist approach. Over the last 20 years, there are more people who have given advanced directives about holding off on futile interventions at the end of live.
When the end is expected due to an incurable illness, Hospice provides a comfort zone, that they will not undergo needless suffering.