Q&A with Diane Meier, MD

Diane Meier, MD: A Powerhouse for Policy Change

Diane Meier, MD says people should not be surprised at how difficult it is to find good care for the seriously ill. Our modern and expensive health care system gets in the way.

“Modern medicine is characterized by fragmentation – very narrow areas of expertise giving depth, but not breadth,” says Dr. Meier, a renowned expert in the field of palliative care, co-director of The Patty and Jay Baker National Palliative Care Center at Mount Sinai and director of the Center to Advance Palliative Care (CAPC), “but it has never made sense to me to have a patient cared for by ten, 15 or 20 highly subspecialized clinicians, because then who’s running the show? Who’s the quarterback?”

For many seriously ill patients in the United States, the answer is that there is no quarterback, states Dr. Meier. Although every specialist may have the best of intentions for the patient, the result is often chaos and according to Dr. Meier, “Poorly communicated and coordinated care can cause harm to patients.”

Palliative care is designed to resolve these challenges. With an added layer of support, it gives patients and their families a guide through serious illness, relief from symptoms and coordination of care in line with their goals and aspirations.

By meeting these needs, palliative care has become the fastest growing medical specialty in the US. In her role at CAPC, Dr. Meier leads a crusade to disseminate the philosophy of palliative care to every site of healthcare for the seriously ill - from large urban hospitals to patients’ homes.

Dr. Meier is also a professor of geriatrics and palliative medicine and the vice-chair of public policy in the Department of Geriatrics and Palliative Medicine  at the Icahn School of Medicine at Mount Sinai. From its founding in 1997 until 2011, Dr. Meier was the director of Mount Sinai’s Hertzberg Palliative Care Institute, now under the directorship of Dr. Sean Morrison.

How would you describe Palliative Care for those who haven’t heard of it before? 

Palliative Care is a new medical specialty that focuses on maximizing quality of life for persons living with a serious illness and for their families. It addresses the pain, symptoms and stress of a serious illness in an effort to make sure that the life that people have is worth living.

It is delivered by a team of clinicians, most often including a doctor, nurse, social worker and sometimes a chaplain, who work alongside the patient’s other doctors to provide an added layer of support. It can be delivered during treatment that is meant to cure, manage disease and to prolong life. It can also be delivered by itself if that is the best thing for the patient and the family.

The goal is to understand what matters most to the patient and their family, and how best to achieve it.

What are some common misunderstandings about palliative care? 

Common misconceptions are that it is the same thing as hospice.

Hospice is actually a version of palliative care that is limited by federal law to care of the dying, people that have a predictable and short prognosis. Other elements of the law that make hospice very limited are that patients or their families (if they are making decisions on behalf of patients) have to choose to give up insurance coverage for life-prolonging, or curative treatment in order to get the benefits of hospice. It is an “either-or” model.

In contrast, Palliative Care is a “both-and” model.

For example, we may have a young person of 24 years old who has a diagnosis of leukemia but has about a 75 percent shot at a cure with a bone marrow transplant. However, the disease itself causes enormous distress – physical, psychological, spiritual – and the treatment only makes that worse. We help take care of young people with curable diseases who are going through a very rough time throughout the course of the treatment of that disease, and until that disease is cured.

We also take care of people with more chronic illnesses that are not going to be cured but, who are not dying of those diseases – for example stroke, heart disease, emphysema, kidney problems requiring dialysis or Alzheimer’s disease. Thanks to modern medicine, these are diseases that we can live with for ten plus years, even if they may eventually contribute to the cause of death. However, those added years can be very difficult in terms of quality of life, independence and the burden on family caregivers. Palliative Care is designed to come in and make those added years worth having.

In addition, we also take care of people who are closing in on the end of their life and need very intensive support in all the domains of palliative care – physical, spiritual, emotional, practical, family support, communication and understanding of what to expect and what it is going to be like, so that patients and their families can remain in control.

Palliative Care is about quality of life and does not depend on how long you are going to live or whether you can be cured or not. It is just about helping people with a serious illness who need support to have a good life, according to what their definition of what a good life is.

Two years ago, you shifted to working full time for the Center to Advance Palliative Care. What are your goals? 

CAPC has three major strategies.

Our first is public awareness. If the public does not learn what palliative care is and demand it, we are not going to get the policy change that we need to ensure universal access.

Our second goal is to shift the focus for palliative care beyond hospitals, to homes and community-based settings. This requires a whole new group of tools and techniques that need to be developed and disseminated, which will take a lot of on the ground interviewing, research work, search and find. There are a lot of great models for palliative care out there but no one knows about them. We have to find them and shine a light on them.

The third is for public policy awareness.

Right now, in order for hospitals to get paid through insurance, Medicare or Medicaid, they have to be accredited by an organization called The Joint Commission, which visits hospitals every few years to determine whether they are meeting the standards and criteria for a quality hospital. Hospitals are highly motivated to meet those standards and get accredited otherwise, they do not get paid.

As an example of one of our policy goals, I would like to make a high-quality palliative care team which meets quality guidelines to become a condition of accreditation. That is to say, to make palliative care a “have-to-have” service, not a “nice-to-have” one. Ultimately, I would like to see that same process occur where most patients are which is not just in the hospital, but at home, in a nursing home, while getting care in a cancer center or in an assisted living facility.

What can we do about the relative lack of trained physicians in the field? 

There will never be enough palliative care doctors and nurses to meet the needs of the nation, so the only logical strategy is to train all front-line clinicians in these practices. That means making palliative care standard practice for all clinicians, which would require not only changes in both medical and nursing school curricula, but also educating clinicians who are mid-career. We cannot wait until all nursing, medical and social work schools incorporate this because we have to help the people that are out there taking care of patients right now, to develop the skills and knowledge to deliver palliative care.

What else is on your wish list? 

We need an evidence base. We need NIH (National Institutes of Health), the VA (US Department of Veterans Affairs) and the AHRQ (Agency for Healthcare Research and Quality), which are the main federal funding agencies, to invest in research so that we know what we are doing when we are taking care of the sickest 5 per cent that drive over 50 per cent of all spending. That is the ratio – that the most complex 5 per cent of Medicare beneficiaries drive 53 per cent of Medicare spending. If you are not getting a handle on quality of care for that vulnerable and high-risk population, you are not getting a handle on costs. The great irony of palliative care is that by taking better care of the most seriously ill, care that keeps people safe, comfortable, and in control at home, we are able to reduce the number of crises and emergencies that drive people to emergency departments and hospitals. Reduced cost is truly, an epiphenomenon of the better care that palliative care provides.