The recent passing of former first lady Barbara Bush, an American icon, also brought a commonly debated discussion to light, palliative, and end of life care. Many articles were published regarding her last days, mentioning she was “foregoing further medical care” or “no longer pursuing medical treatment.” These types of statements are not only inaccurate, they also minimize the incredible medical care provided by palliative care and hospice teams.
To realize the utility of these aspects of medical care, it is important to understand them. Palliative care and hospice both focus on managing symptoms. Palliative care can be combined with curative treatment as early as at time of diagnosis and focuses on improving the quality of life (QOL) of patients and families by assessing and treating pain and other symptoms. This includes physical ailments, spiritual and psychosocial issues. In oncology, a palliative care team can identify and treat problems while working in concert with the oncologist. There are also patients who do not want to receive treatment for their cancer. In these cases, seeing a palliative care physician can be extremely beneficial in managing symptoms and eventually aid in the transition to hospice.
Hospice care also provides palliative care; however, patients are enrolled in hospice with a life expectancy of six months or less. Sometimes patients enrolled in hospice live longer than six months. Enrolling in hospice can occur for a variety of reasons including, but not limited to; risks of treatment outweighing the benefit; exhaustion of available treatment options; the patient is no longer able to tolerate further treatments because of overall health; patient preference after discussions with their physician.
I describe hospice care as a transition to a different type of medical treatment when compared to active treatment of the malignancy (or other terminal medical illness). I explain to patients that you came to me to aggressively manage and treat your malignancy. When you reach a point where treatment may cause more harm than good, it is time to consider implementing a medical plan where the focus is aggressive management of symptoms. Hospice is the way to ensure this happens. When enrolling in hospice, QOL is the ultimate goal, and in this way, patients are able to spend the time they have left in the manner they choose while receiving excellent medical care.
I worked in New Zealand for six months as a locum tenens internist, and I was amazed at how seamlessly physicians and patients were able to make the transition into hospice. In New Zealand, hospice is seen as a philosophy of care. Patients are referred early on, sometimes while receiving active treatment for their illness. Patients and their families were appreciative of early discussions as they knew how to prepare down the road. Hospice was seen as a time to spend with loved ones, often in the comfort of their own home. Hospice and palliative care is free of charge in New Zealand. This also likely results in saving money in the health care system. Studies in the U.S. have shown substantial medical spending is done at the end of life. According to a study from 2011, one out of every four Medicare dollars is spent on services for the 5 percent of beneficiaries in their last year of life. Often patients are receiving aggressive treatments that will do little to prolong life, or improve QOL. Many patients do not feel that hospice is the best option because it implies giving up. As a result of this patients suffer through treatments that are unlikely to provide any benefit while racking up thousands of dollars in bills. In hospice, their final days/months could be spent with family and friends in the comfort of their home.
There are also studies that show certain patients receiving palliative care live longer. A study published in the NEJM in 2010 compared patients with metastatic lung cancer who received standard oncologic care alone vs. those who had palliative care incorporated early on. Patients who received early palliative care with standard oncologic treatment had a better QOL and lived longer despite less aggressive oncologic treatments at the end of life (11.6 vs. 8.9 months). This is one of many studies that shows the benefit of introducing palliative care early on. There is often a stigma that palliative care or hospice is “giving up,” but the opposite is true. These types of medical treatments do not mean the patient is giving up on life or treatment. Cancer is not a fair adversary. By suggesting this, it makes it seem that the patient and the cancer are on a level playing field, when in truth, there may come a time the patient cannot do anything to stop the cancers onslaught, no matter what “fight” is left in him or her.
It is important to educate those in health care on the importance of palliative care/hospice discussions. Broaching these topics early on allows the patient to have conversations with their families about things that may be left unsaid. Our job is to not only treat the underlying disease, but to help patients achieve what they would like in their lives. We must make patients aware of the resources that hospice is able to provide, and make sure hospice is not seen as “giving up” or “foregoing medical care.” The one thing that is certain in life is that eventually, it will end. As clinicians, we must help our patients live and enjoy the remaining part of their lives by incorporating palliative care early on and presenting hospice as a continuation of medical care.
Barbara Bush lived and died with grace and dignity. As physicians, we should promote these discussions and allow more of our patients to make the decision to pursue palliative care and hospice. We must work towards re-educating the public on the utility of hospice and how much it can do for patients by allowing them autonomy and grace. This is an integral part of providing excellent medical care until the end of life.
Shikha Jain is a hematology-oncology physician who blogs at her self-titled site, Dr. Shikha Jain. She can be reached on Twitter @ShikhaJainMD.
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