The Massachusetts Health Care Quality and Cost Council met to discuss the recommendations of the Expert Panel on end of life (EOL) care and to hear a presentation by Kevin Beagan, Deputy Commissioner of Insurance, regarding the health care components of the Governor’s small business bill.
Lachlan Forrow, M.D., Chair of the Massachusetts Expert Panel on End of Life Care, delivered the Panel’s recommendations to the Council. He noted that the goal of the Panel was to “develop processes and measures to improve adherence to patients’ wishes in providing care at the end of life” and to “ensure that health care providers ask about and follow patient’s wishes with respect to invasive treatments, do not resuscitate orders, hospice and palliative care, and other treatments at the end of life.” Dr. Farrow noted that health care should be capable of promising dignity, comfort, companionship, and spiritual support to patients and families at the end of life. He highlighted some of the Panel’s key findings, for instance, that on average 140 people in the Commonwealth die daily, the majority of which are not related to acute episodes or traumas. Additionally, 70% of people in the Commonwealth want to die at home (citing AARP statistics), when in actuality approximately 70% of people die in institutions. Dr. Farrow noted that the Panel’s central finding was that there is little to no accountability in the Commonwealth for ensuring that EOL care is anchored in patients’ wishes. There are also no standards or processes for eliciting, documenting, or honoring patients’ wishes.
In the Panel’s opinion, the two prerequisites for change are 1) to engage people in voicing, individually and collectively, what we want and need during serious advancing illness, through the end of life, and 2) to hold health care providers publicly accountable for delivering patient engagement and sharing best practices to drive ongoing improvement. The Panel’s recommendations toward these ends were ultimately split into five categories:
- Massachusetts residents must understand the full range of their options for EOL care;
- Health care providers must reliably identify and meet the wishes and needs of patients with serious advancing illnesses;
- Massachusetts must cultivate a skilled workforce to meet patients’ EOL needs;
- Financial systems must support the provision of care that patients want and need; and
- There must be a responsible body with existing credibility, which has the resources and authority to ensure achievement of the above requirements for excellence in EOL care, with measurable quality indicators and public accountability.
Each category contains several recommendations toward meeting the overarching goal of the category.
After Dr. Farrow’s presentation, there were a few very poignant comments. One comment came from Jim Roosevelt, President of Tufts Health Plan, in response to one of the Panel’s findings that the Commonwealth cannot improve EOL care by focusing on the identifiably “dying” but instead must address the trajectory of serious advancing, ultimately-fatal illness. Mr. Roosevelt noted that for most diseases from which people ultimately die, doctors are unable to predict when exactly the patient will die. Although much of a person’s lifetime health care dollars are spent in the final weeks of a person’s life, Mr. Roosevelt commented that, ultimately, hindsight is 20/20 and if we knew that certain weeks were actually the final weeks of a person’s life, then the patient’s medical decisions may be different.
Dr. Farrow responded that to improve EOL care, we must have discussions focusing on the patient’s wishes and values. When discussing an ultimately-fatal illness, the doctor should tell the patient that the illness will kill the patient unless something worse does sooner. Then, the doctor should frame the discussion as seeking to prolong life, but also eliciting the patient’s wishes regarding where and how they prefer to spend their final months (eventually) so that the doctor can then honor the patient’s wishes.
However, these open discussions between patients and physicians are not happening. An AARP study has reported that currently, EOL discussions are not taking place for the vast majority of patients (only 1 in 6 patients in the study reported talking about EOL issues with their doctors). Dr. Farrow commented that these discussions don’t occur because EOL care is not part of the current medical agenda. Therefore doctors are not taught in medical school how or when to discuss EOL issues nor do they get into the habit of having such discussions once they are actually practicing. However, in order to improve EOL care, patients must know their options and make informed decisions, just as is the case in all other realms of medical treatment. As such, doctors must start having these conversations about patients’ wishes for the end of their lives if they ever hope to get good at having such conversations. If doctors shy away from the issues because they are not accustomed to having discussions regarding end of life care, then the issue will never become part of the medical agenda in the Commonwealth.
The next presentation to the Council, given by Deputy Insurance Commissioner, Kevin Beagan, summarized the key health care components of the Governor’s small business bill, which was filed with the General Assembly on February 10, 2010. The bill responds to the huge rate hikes felt by small businesses in the past year. Some small businesses have reported up to 70% increases in their health insurance premiums. With increases this high, small businesses are struggling to keep afloat and are desperate for regulation and relief.