All too often, I hear the question, “How do people know when it’s the right time to ‘give up’ and turn to hospice?”
Those of us who work with patients with advanced illness know that those who choose hospice are not “giving up.” They still have a lot of things they are fighting for. Their focus has changed, but they still have important goals.
They want to spend more time at home and less time at the hospital or in doctor’s offices. They want more time with family. They want to be more comfortable for whatever time remains. Once comfortable, they want to place more emphasis on the emotional and the spiritual and less on the medical and the physical. Quality of life becomes paramount.
Many people believe that choosing hospice means that length of life will be sacrificed in order to be more comfortable. In other words, they think, “If I choose hospice, I will die sooner, but I will have less pain.”
Research is beginning to confirm what hospice team members have sensed for a long time – choosing a path emphasizing comfort does not have to shorten life. I just looked at an article that was published March 4, 2014 in the online version of the British Medical Journal (BMJ 2014; 348:g1219). It studied patients who were receiving palliative chemotherapy.
Palliative chemotherapy is anti-cancer medicine given when the cancer is so advanced that there is little or no hope of cure. Palliative chemotherapy is given with the hope that it will slow the cancer down, prolong life, and ease symptoms when cure is not possible.The researchers compared two groups of terminally ill patients with similar illnesses – a group that received palliative chemotherapy and a comparable group that did not.
Though there have been several objections raised about the way the study was done, the findings remain very interesting:
- There was no significant difference in survival between the two groups. In other words, those that chose NOT to have the palliative chemotherapy lived on the average as long as those who chose to have it.
- Those that opted for palliative chemotherapy were more likely to:
- Undergo cardio-pulmonary resuscitation (CPR)
- Be placed on a ventilator
- Die in an intensive care unit
The point here is that in some cases, choosing to pursue aggressive care (in this case palliative chemotherapy), does not necessarily mean you will live longer and it may end up causing some outcomes you don’t want. Most people with a terminal illness say they want to do die peacefully at home, and don’t want to die on machines in an intensive care unit.
One more thing about palliative chemotherapy — according to a research study published a couple of years ago in the New England Journal of Medicine (NEJM 2012;367:1616-1625), the majority of patients receiving palliative chemotherapy for their lung or colon cancer were under the impression that the treatment would cure their disease. They didn’t really understand the limited benefits of this treatment.
There are several lessons here.
- Choosing ongoing aggressive care over comfort – oriented hospice care may not end up prolonging life.
- Ongoing aggressive care comes with its own set of potential “burdens” that need to be weighed against the potential “benefits.”
- We need to make extra sure that patients understand the true potential benefits and burdens of the choices they have whether its ongoing aggressive care or comfort-oriented care.
The hospice benefit was designed for the last six months of life. People with a life-limiting illness will choose to enroll in hospice at different times depending on their particular goals and wishes and how those goals and wishes evolve over time. Enrolling in hospice does not necessarily mean life is shortened.
When a patient chooses hospice, he has not “given up,” his priorities have changed. The new priorities — comfort, family, home, quality, peace, etc. — are as important as the old priorities and the hospice interdisciplinary team works hard with patient and family to achieve the new goals.