As physicians, payers, and policymakers increase their focus on end-of-life care in America, neurologists at Massachusetts General Hospital (MGH) have embarked on a multifaceted quality improvement project to improve decision-making and protocols for care at the end of life.
“There is a real need for education on end-of-life care in neurology, and we are excited to see how this unfolds and to work on extending it further as we go,” said Allison R. Gray, MD, a recent graduate of the Partners Neurology Residency Program at MGH and Brigham and Women's Hospital.
Dr. Gray is co-leading the Neurology Quality and Safety Committee's Goals of Care initiative with Mary Guanci, MSN, RN, a clinical nurse specialist in the neurology intensive care unit; and project manager Aurelie Cordier. To date, the quality improvement (QI) team has standardized education, documentation, and protocols for activities ranging from organ donations and writing the note when a patient dies to holding a family meeting and requesting an autopsy.
Still to come: developing simulation exercises and role-playing exercises to help MGH staff and residents improve decisions and family communication about whether to recommend shifting the goals of care to focus on comfort.
“We have a robust palliative care service that provides excellent end-of-life care, but the neurology side of things needed attention, especially around issues like prognosis and outcome prediction in the acute setting,” said Aneesh B. Singhal, MD, director of neurology quality and safety at MGH. “That's what we decided to address.”
As they search to improve the value of health care, many are turning their attention to end-of-life care. Of the $554 billion in Medicare spending in 2011, about 28 percent — $170 billion — was spent on patients during their last six months of life, according to the Centers for Medicare & Medicaid Services.
While high expenditures might be justified if they improve a patient's quality of life, futile care often is disruptive or uncomfortable. Joan Teno, MD, and her colleagues reported in a February paper in the Journal of the American Medical Association that 29 percent of Medicare beneficiaries who died in 2009 were admitted into an intensive care unit in the last month of life. Thus, good decision-making about the goals of care near the end of a patient's life is essential for both the quality and cost of care.
The quality of decision-making was one of the things that motivated Dr. Singhal to initiate MGH's Goals of Care QI project. Whether patients present with acute neurological injury such as stroke or traumatic brain injury or chronic progressive illnesses — brain tumors and motor neuron disease, for example — a physician may not be clear about what is best for the patient.
“Questions around the goals of care are often fraught with discomfort among the front line — the residents and nurses — because people may not be comfortable talking about the terminal stages of illness,” he said.
He believed that, in some cases, decisions in the emergency department were being made prematurely, and information provided to family members did not always help them with decision-making. Beyond that, he had several other quality concerns — among them were declining autopsy rates and low organ donation rates. In addition, the documentation in patient records did not always reflect the level of care provided, and the residents and staff did not know the steps to take when a patient died.
“The overall goal is to improve the education and comfort level of residents, staff, and nurses; to conduct proper family meetings; and to improve everything that goes on at the end of life,” Dr. Singhal said.
In the first phase of the initiative, the QI team created educational documents and templates that standardize procedures for care near the end of a patient's life. These include a how-to guide for holding a family meeting.
“These meetings can be some of the most important, most pivotal parts of a patient's experience and the family's experience, so it's really important to be prepared for a meeting like that,” Dr. Gray said.
The guide, which is summarized in an online handbook and on a pocket card, lists reminders needed for a successful family meeting: making sure the right people are in attendance; words and phrases that should be avoided; the steps of carrying out the conversation; and guidance about giving prognostic information.
Online prognostication tools reflect the experience of a broad sample of patients, but their information may not be pertinent to the patient at hand, Dr. Singhal said. “I find that's really a fundamental problem in acute neurological situations like stroke,” he said. “We really emphasize the point that these are just a guide, and we have seen examples of patients who, according to the tool, had zero percent chance of survival but who have actually gone back to college. By putting in these examples, I think it reminds the residents and the staff that the tool is just a tool and the score is just a score, but the patient in front of you might be very different.”
The QI team also developed a document that lists triggers for consulting palliative care or the hospital ethics committee. “It's often not clear as to what's the right time to bring in an external consultant, but we have reached consensus on when that is appropriate,” Dr. Singhal said.
The document also includes a contact card to make it easy for clinicians to contact the New England Organ Bank to arrange for organ donations; detailed instructions on how to complete the standard death report form; a templated note for the family meeting to ensure complete documentation of the discussion; and a standard order set for medications appropriate for various end-of-life situations.
Using the order sets, standardized notes and protocols are now mandatory for neurology residents.
USING QUALITY IMPROVEMENT TECHNIQUES
Quality improvement for end-of-life care requires a multidisciplinary approach, and working with palliative care specialists is essential, Drs. Singhal and Gray agreed.
“End-of-life care in neurology can be quite different because the pathologies that lead to death in neurological patients can be acute and different than in patients with long-term cancers and other medical illnesses,” Dr. Gray said. “But it has been enormously helpful to have the collaboration with our palliative care colleagues here.”
Beyond that, the Goals of Care QI team includes Dr. Singhal; a project manager trained in QI techniques; a neuroethicist; a neurointensive care physician; a neurointensive care fellow; and a case manager.
“We have learned that it is extremely important to utilize the expertise of all the key players that factor into the patient's care in the hospital,” she said.
The team is measuring its progress in several ways. A pre-project survey of caregivers was conducted to get baseline rates of satisfaction about end-of-life care and to assess their level of comfort with and their education about end-of-life protocols. A post-implementation survey will identify where improvement has been made and areas that need more attention.
Additionally, MGH will monitor rates of autopsy and organ donation after neurologic patients have died, and medication errors for drugs that are commonly used in end-of-life care, Dr. Singhal said.
“And we have implemented what's known as a death report form, which asks frontline caregivers directly about whether the death was preventable and whether anything within the system could have been improved,” he said. “So we get constant feedback in trying to improve the whole process.”
MGH TIPS ON HOW TO LEAD A FAMILY MEETING
* Establish the purpose and goals of the meeting.
* Review the chart so that you know patient's presentation, condition, workup, and treatment thus far.
* Confirm team members who will attend the meeting, the meeting leader, and meeting time. Keep key outpatient providers in the loop. It is important to give one unified message. The patient's nurse should always be at any family meeting. Inquire about the patient and family members who will attend the meeting.
* Establish the proper setting for your meeting: choose the conference room, not the patient's room. Close the door and place a sign on door. Sign your pager over and put devices on vibrate. Obtain enough chairs and tissue boxes.
* Open the meeting by having everyone introduce themselves and their titles. State the purpose of the meeting.
* Inquire about the family's understanding of the patient's condition
* Review the patient's medical condition: Keep it simple. Avoid medical jargon. Answer questions. Allow consultants to weigh in.
* Respond to the family's reaction/emotion with empathy.
* Present the best estimate of functional outcome as of this point: Do not rush long-term predictions in first 72 hours.
* Confirm/clarify the patient's goals of care.
* Listen and answer questions.
* Provide recommendations for care going forward. Guide the family. Do not offer unreasonable treatments or procedures. Possible plans of care could include continuing aggressive care and/or shifting goals to providing comfort. Do not escalate plans for a DNR (do not resuscitate) or DNI (do not intubate). If shifting goals to comfort measures, explain what this means. Do not mention organ donation unless a huddle with the organ bank has occurred.
* Review and summarize the goals of care going forward: For example, tell them it can involve palliative care if there are a lot of symptoms to manage. Tell the family you will continue to support them in the coming days.
* Provide resources for support for family: social work, chaplaincy, case management.
* If the patient chooses comfort measures, convey that case management will help determine the options for hospice.
* Debrief the team.
* Document the meeting in an electronic medical record form, print, sign, place in chart.
MGH: WHAT TO SAY, HOW TO SAY IT: ADVICE TO THE END-OF-LIFE TEAM
* Watch your language. Do not say, “We will withdraw care.” Instead use words like “We will be shifting care to comfort.”
* Do not say “I know what you're going through.” Instead, say things like, “This must be very hard.” Or “I can imagine that this must be very difficult for you.”
* If, from your clinical impression, Mr. Smith's functional outcome will be very poor despite all medical/surgical treatment, Do not offer “doing everything” as an option. Remember, you are there to help guide the family. You need to present reasonable options for the patient's care going forward.
* Always enlist the knowledge and expertise of the nursing staff. They have been at the bedside with family, and as such, they are aware of the family dynamics and the family's understanding of the patient's injury.
* Discuss feeding/hydration. Many families experience feelings of guilt about stopping feeding. Many view removal of feeding as “starving patients.” If families ask about this, respond with: “Our experience tells us that patients who are dying do not feel hunger when feeding is removed. As the body shuts down, it no longer requires the same intake it once did. This is not a painful process. Feeding or hydrating your (relation) would actually only prolong his/her dying process.”
* Families always want to know how long someone is going to live, and we are terrible at predicting that. Give a broad range (that is, “hours to days,” “weeks to months,” or “likely a number of months”) when discussing expected lifespan and explain that it is extremely hard to know for sure. Avoid quoting specific numbers of months or years.
* Manage conflict. Listen and be empathic. Try to determine the source of conflict: guilt, cultural values, family dysfunction, lack of trust in care team. If you feel that there is strife between the family, encourage them to talk amongst themselves and focus on what their (relation) would have wanted in this situation. Set time-limited goals with specific benchmarks.
* Remember that your ultimate goal is to provide the best care for your patient, care that embodies grace and dignity, while also helping the family through a great ordeal.
* Remember that the family may remember this meeting for the rest of their lives. This meeting may literally frame the future of how they relate to physicians, whether they trust hospitals and clinicians.
* Try as best you can to create something good from any meeting you have, and remember that medicine teaches us: “First, do no harm.”
This article is the second in a new series profiling innovative neurology initiatives around quality improvements and performance measures. For more background on the movement, visit http://bit.ly/10rlOFX.
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•. Teno JM, Gozalo PL, Bynum JP, et al. Change in end-of-life care for Medicare beneficiaries: Site of death, place of care, and health care transitions in 2000, 2005, and 2009. JAMA 2013; 09(5):470–477.© 2013 American Academy of Neurology
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