Recently, a co-worker told me the story of her mom’s death. It was heartbreaking. All deaths have an element of sadness to them, but not all feel tragic like hers did. My co-worker’s mom was diagnosed with a very aggressive form of cancer in December several years ago. The doctor ordered curative treatments and kept her mom in the hospital through January. Finally, in early February, my co-worker (an RN) asked the doctor if he believed this treatment would work. Would it cure her mom? He said, “No, but he wanted to do everything he could for the patient.” Almost immediately, the patient’s daughter decided to have some difficult conversations with her mom. She asked her, “Do you want to stay in the hospital and try these curative treatments or do you want to come home and receive comfort care and support?” Her mom chose to go home. She died a few weeks later. The story was told to me with a great deal of emotion. Losing her mother was sad, but missing out on those crucial weeks while her mom was in the hospital felt tragic. I was told, “No one knew if my mom would choose curative treatment at the hospital or comfort care at home, but what really mattered is she had a choice, and that was significant.” Before her daughter’s intervention, the patient had not been informed about all of her options. If she did not have a daughter familiar with multiple health care options, she might have continued with aggressive treatments until she died in the hospital. Her story is a very common one.
Most polls show that around 65% of Americans want to be taken care of at home when or if they have a serious illness, and the same number want to eventually die at home. The reality is this happens around 43% of the time. Those numbers reflect a huge gap between what people want and what people are receiving. So what can be done? Most people are familiar with the hospice concept. However, most people are not familiar with palliative care. Palliative Care means “relieving pain or alleviating a problem without dealing with the underlying cause.” Hospice care is a type of palliative care. Hospice is end-of-life palliative. Today, a trend is growing in health care and society. Palliative care (pain and symptom management) is working parallel with curative treatment. For someone like my co-worker’s mother (and the millions like her), she would not have to choose BETWEEN curative and palliative, but have both. Specialists can do their best to cure the cancer or treat the heart failure while palliative professionals expertly treat the pain, anxiety, and other problems these advanced diseases cause while communicating the realities of treatment to patient and family.
The figure below helps communicate the changes that are coming in health care. Notice the Palliative Care starting in conjunction with the “Life-Prolonging Care”. Palliative Care generally increases over time as the advanced illness progresses. Eventually palliative care shifts into hospice or end-of-life palliative.
Unfortunately, there is a very real gap in our health care system. Many people with advanced, chronic illnesses (especially the elderly and handicap) are caught in a vicious cycle. In the “old” system they have no choice but to receive curative treatment until they qualify for hospice (a terminal six-month terminal diagnosis). What if the patient needs quality pain and symptom management WHILE receiving curative treatment? Well, you can’t currently do that while in hospice. Today, it’s either hospice or curative. What if you are nearing the end of your curative treatments, but you do not qualify for hospice? What fills that gap for the chronically ill who are not considered six months terminally ill? Obviously, I believe the answer is highly funded, quality palliative programs which work collectively with local hospitals, home health agencies, hospices, family physicians, and other healthcare providers.
The bad news is there is no formal structure that receives reimbursements from Medicare/Medicaid to provide this crucial type of care. The good news is that is all changing. Pioneers in Florida, California, and other states (soon to be Oklahoma...specifically Norman!) have started Palliative Programs without any outside funding. I know of groups who have lost money doing this. Over and over I have heard them say they “are not providing palliative care for financial reasons, but it is the best thing to do for our community, and that’s what matters.” They are right. The reality that people have to choose between curative AND palliative care is mind-blowing; the current health care gap that exists for those with advanced illnesses is tragic. In twenty years this will seem absurd to society, but for us to get there, changes will need to be made today.