The term "palliative care" used to mean keeping a patient comfortable until he or she died. Today it has evolved into a discipline to help patients live longer and better.
When the term “palliative care” entered the cancer vernacular many decades ago it was synonymous with end-of-life care and ultimately meant keeping a patient comfortable until their death with adequate pain control. But that is no longer.
The expanded number of drugs, treatments and approaches has meant many patients with advanced cancer are living longer with a better quality of life — a situation that has presented many challenges for patients and doctors alike. Physicians used to be able to predict rather reliably how long a patient would live because the body of evidence provided a somewhat reliable trajectory.
Now, each patient is truly unique. I know women who have lived 20 years with metastatic cancer — and with good quality of life. For many, it has meant hitchhiking from one drug to the next. For others, it has meant being treated as a chronic patient who has long stretches of time when the cancer is in remission – it may still be there, it just isn’t growing.
For patients who want to understand what is happening with their disease, the doctors often don’t know and they become reluctant to place a time frame on the patient’s life. Of course, there are also those oncologists who are always optimistic and those who are always pessimistic because that is the way they approach the disease from either history or their own life view. Studies have shown that how patients and doctors interact about information can have an impact on the patient’s quality of life and how long he or she lives. Not understanding their disease and not understanding how long they will live is a terrible way for patients to live.
Kaiser Health News released a story around this issue (http://khn.org/news/how-long-have-i-got-doc-why-many-cancer-patients-dont-have-answers/) that explores these issues from both the physician and the patient perspective with few options for improvement.
It looked at a number of issues surrounding patient/physician communication and arrived at a conclusion seen elsewhere in studies over the past decade: People with advanced cancer don’t know enough about their disease to make informed decisions about treatment or how they want to spend their remaining time.
The story presented a number of facts arrived at in studies:
1. In a study published in 2016 in the Journal of Clinical Oncology, only 5 percent of cancer patients with less than six months to live had an accurate understanding of their illness. Thirty-eight percent couldn’t remember ever talking to their doctor about their life expectancy.
2. A 2012 study in The New England Journal of Medicine, noted that 69 percent of patients with metastatic lung cancer and 81 percent of people with advanced colorectal cancer did not understand that chemotherapy would not be able to cure their disease.
3. Although almost half of Americans use hospice care — which focuses on comfort care at the end of life — studies show that many people enter hospice very late in their illness, often only greater chance for an easier death.
While it’s easy to blame the doctors for this lack of information, it’s unfair, because whether a physician tries to communicate accurately what the future holds, it is impossible to know what the patient hears. Anyone with cancer knows that hearing can be turned on and off when the subject matter becomes too difficult or painful. Those patients who say they want the truth become angry when they feel like the doctor isn’t giving it to them when in all reality today’s new drugs can still offer results no one expects.
And what does this all have to do with palliative care? A lot.
Palliative care has evolved into focusing on the patient’s quality of life, including education about their disease, pain control, discussions about end of life and symptom management, as well as caregivers’ needs. The professionals remove the expectation that the physicians will have all the answers and their training helps those with advanced disease understand and prepare for death.
Studies have shown that palliative care helps patients as well as improving their understanding of their disease. Indeed, the American Society of Clinical Oncology (ASCO) now recommends that patients with advanced cancer receive palliative care as soon as possible and studies show that palliative care helps patients live longer and better ( http://www.nejm.org/doi/full/10.1056/NEJMoa1000678#t=article).