One of the beautiful tools of social media is the ability to spread ideas and information at lightning speed. In medicine, a study from 1998 indicated it takes an average of 17 years before new knowledge generated by research is assimilated into clinical care. I venture to say if that study were performed again today, the time compression would be astounding. The internet started this trend, and social media is adding to the pace of change in our health care system. My grandiose dream in this post is for social media to force a needed change in an important component of our health care system – hospice.
The hospice movement was started in the 1950’s in London by Dame Cicely Saunders, and the first hospice facility opened in London in 1967. It took theUnited States seven years to follow with their first hospice facility in 1974. Since that time, the hospice movement has blossomed and hospice now serves 44.6% of patient deaths. Unfortunately, the median length of service for hospice patients is only 19.1 days, which means many patients did not receive the benefit of hospice care until the end of a difficult illness.
As we embark on new ideas, hopeful outcomes and unintended consequences occur. I still love the convoluted quote from Defense Secretary Donald Rumsfeld in 2002, “We know there are known knowns: there are things we know we know. We also know there are known unknowns: that is to say we know there are things we know we don’t know. But there are also unknown unknowns — the ones we don’t know we don’t know.” As much as people made fun of him, he makes a good point. This brings me to the evolution of hospice and where we need to go next. There are three main facets of hospice care that need to change immediately.
The requirement to give up on curative treatment.
The original idea of hospice is that once curative treatments are no longer effective, a patient enrolls in hospice to receive comfort care. In our culture of “fighting” cancer, an illness that should be addressed through ongoing decisions about the risk and benefit of interventions gets turned into a battle that should be won or lost. No one wants to be a loser, so the patient is reluctant to quit curative care until there is absolutely no hope. Many physicians are geared the same way, and their desire to give hope and “beat” disease results in a reluctance to call in hospice even when they know the situation is bleak.
In the last decade or so, the movement has been toward “palliative care” – care that focuses on easing symptoms without a focus on curing the disease. Palliative care can address the symptoms of the illness or symptoms that result from treatment of an illness, such as the side effects of chemotherapy. A palliative care physician can assist in any type of illness – advanced heart or lung disease, cancer, renal disease – you name it. If you have an unbearable symptom from your disease or treatment, a palliative care doctor is the one who can help. And the kicker – early palliative care can improve longevity. I expect the decreased burden of stress and discomfort helps patients live longer with advanced illness.
Many hospice organizations allow patients to enter hospice to receive palliative care even if they want to continue some type of treatment for their illness. Unfortunately, that choice varies from community to community, and is often dictated by the size of the hospice organization or the profit motive. Another stumbling block is the Medicare requirement that patients “give up” curative care when they enter hospice if Medicare is paying the bill. Considering that Medicare pays for 84% of hospice care, this is a significant issue. Micromanaging care based on payment takes precedence over common sense of what is right for the patient. A recent article in “Health Affairs” outlines these issues.
What makes this situation more complicated is that some treatments frowned upon by hospice actually help the patient feel better. For example, intravenous fluids to hydrate a patient most often increase symptom burden – the patient has to urinate more and fluid can build up in the tissues and lungs. However, I recently had a client with multiple myeloma and fluids decreased the excess protein in his bloodstream which improved his sense of well being. Hospice refused to administer the fluids, so he went to his doctor’s office to receive this treatment. The reliance on strict rules takes away the ability to tailor treatment to the patient. And why do the rules have to be so black and white? This brings me to point number two…
The fee for service payment system when a person is undergoing treatment and subsequent move to flat fee payments for hospice is totally messed up.
Doctors and hospitals are paid based on how much work they do, known as “fee for service.” Although the majority of doctors do the right thing, the incentive to “do more” is there in a number of ways. A dying patient in despair asks, “Is there anything else that can be done?” Of course, the doctor wants to do everything she can to help the patient. It is easier to provide treatments and get paid more than it is to have a difficult conversation with the patient to convince them that a move to comfort care is the better route.
Hospice is paid differently. Hospice is paid a flat fee per day for the care they provide. The incentive is totally opposite fee for service – the less they do, the higher their profit. This is the reason some hospice organizations will not provide certain services. Chemotherapy and radiation are expensive and the cost of patient care can easily exceed the payment hospice receives for providing that care.
This is a difficult problem to address. The move toward patient centered medical homes may eventually provide the answer.
And finally… who can really tell if you have less than six months to live?
Verification that you are going to die in less than six months is a requirement to enter hospice. Physicians are thankfully moving away from the “God” complex and it is unfortunate they are still asked to play that role in making predictions on life expectancy. This requirement delays care that could help people live longer and more comfortably.
Now, the call to action – what can we do now?
- A palliative care consult should be obtained at the onset of a life threatening diagnosis or seriously advanced illness. This way, people can receive comfort care while they are being treated for their illness. It will also ease the move to better end of life care once curative treatment is no longer effective. If you or someone you love has a serious illness, insist on a consultation.
- Implore Medicare to remove the six month rule on hospice enrollment. What can you do that won’t take much time? Use social media – tweet to @MedicareGov “Remove six month life expectancy requirements for hospice care. Pay for palliative care at the beginning of a serious illness.”
Payment systems must change. Fee for service is a problem in all facets of our health care system and per diem fees present a different set of problems. What can you do about this? Nothing yet. I am hopeful the move toward patient centered medical homes will eventually produce solutions.
- Support organizations working on change in advanced care models. The Coalition to Transform Advanced Care is hot on this mission. They have organized hundreds of individuals and organizations to transform the way we help people with serious illness. Their national summit will be held on January 29 and 30 to frame the challenges, present solutions, and create an action plan for results. I look forward to their reports.
This article was originally published by Forbes.com on 19 January 2013.