Promoting generalist and specialist level palliative care is a major step towards changing hospital culture
The past 20 years has seen the growth of a new medical and nursing specialty, hospice and palliative medicine/care. Most hospitals now have some type of palliative care program-most commonly an interdisciplinary consultation service seeing patients throughout the hospital and increasingly, seeing patients in outpatient clinics and other community sites of care. These programs are staffed by palliative care specialists, clinicians who are board certified in the new specialty. A 2013 report from the Advisory Board Company compiled research data that supports the benefits of hospital palliative care programs to improve quality, lower cost, and improve patient satisfaction.1 However, considerable palliative care services are also provided by generalists, all other clinicians who see seriously ill patients, but who lack specialized training in palliative care.These include primary care clinicians, hospitalists, oncologists, emergency room clinicians, unit-based nurses and social workers, etc.The key elements of palliative care services include:
- The patient and family are the unit of care.
- Care is provided to anyone with one or more serious, potentially life-limiting or life threatening illness, at any time during the course of the illness.
- Care includes attention to distressing physical, psychological, spiritual and social needs.
- There are no eligibility criteria to palliative care services based on disease type or prognosis.
Yet, despite the growth of the new specialty, far too many patients with one or more chronic life-limiting diseases die as hospital inpatients due to poor clinician-patient communication. In particular, the following issues are often not discussed:
- The nature of the illness including natural history and realistic prognostic estimation
- Care options including the option of shifting from life-prolonging to comfort care
- An understanding of patient-centered care goal.
- Future medical care and disposition options matching patient-centered goals of care
The failure to have timely conversations leads to:
- Uncertainty, anxiety and unnecessary suffering by patients and family
- Avoidable emergency department and ICU admissions
- Prolonged hospital and ICU length of stay
- Excessive use of non-beneficial medical interventions
- Excessive non-reimbursable costs to hospitals (care exceeds DRG payments) challenges
- Moral distress among hospital staff/staff turnover
Patient-clinician conversations relative to palliative care can be conceptualized in three phases or levels. The Level 1 conversation is for all adults, healthy or ill, to determine their general preferences, values and to designate a surrogate decision maker should they become unable to make their own decisions. Level 1 is referred to as Advance Care Planning, and the documentation that accompanies this is an Advance Directive. The Level 2 conversation is for patients with a serious illness, but not in crisis. This conversation can help patients identify their personal values and goals relative to their specific illness. The Serious Illness Conversation project is an example.2 Level 3 is the Goal of Care Conversation, aka The Family Meeting. This conversation typically occurs at times of medical crisis or major transition, most often in the hospital, but can also occur in the outpatient setting. Ideally, all seriously ill patients will have completed both Level 1 and 2 conversations so that when/if a crisis occurs, decision-making is much easier for patients, families and the healthcare team. However, many patients have not had these conversations; it is the cumulative failure of clinicians, patients and families to have these discussions that leads to the negative outcomes described above.
Improving the communication ability of clinicians in the hospital setting, where seriously ill patients are commonly in crisis or major decision points, is a key step towards improving patient-centered care and associated hospital metrics: reducing inpatient mortality, improving patient satisfaction and readmission reduction. Clinician Goal of Care communication skills are rarely taught in medical or nursing schools. Improving and embedding these conversations as a routine aspect of care requires changes to the system of healthcare delivery:
- New standards of care
- A method to screen patients for unmet palliative care needs
- Clinician training
- Documentation standards
- Data collection and quality improvement
- Improving both clinician education and documentation concerning goals of care communication has been endorsed by several National Quality Forum measures (see below) along with the Institute of Medicine report, Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life, 2014.
As there will never be enough palliative care specialists to meet all the needs of seriously ill patients, hospitals wishing to improve the patient experience and improve key metrics (readmission, mortality, satisfaction), need to foster clinician training and systems changes to support generalist clinicians assuming a greater role in clarifying patient-centered goals for most patient situations, reserving specialist palliative care clinicians for truly complex problems. To get started, hospitals and health systems need to make a commitment to a multi-tiered approach to changing both the culture and system of practice, including:
- Administrative leadership, particularly from the chief medical, nursing and quality officers
- A commitment to train key clinicians, especially physicians, advanced practice nurses and physician assistants, in the Goal of Care communication skill-training must include in-person, small group work, that allows clinicians time to practice and receive feedback on their communication skills
- A commitment to free-up clinician and administrative staff time to work on the systems change features that will support clinicians to have timely discussions: new standards of care, EMR documentation templates for Goal of Care discussions and data collection
- A commitment to measure outcomes and develop quality improvement initiatives that seek to improve care processes
By helping generalist clinicians improve their skills in conducting and documenting patient-centered Goal of Care conversations, hospitals can expect measurable improvements in key outcome metrics. Aurora West Allis Medical Center in Milwaukee, Wis., followed this approach and completed a baseline assessment of inpatient deaths in 2013. Results indicated that conversations to document patient preferences were either not occurring (failure to plan), or occurring shortly before death, leading to an excessive number of both inpatient deaths and deaths in the intensive care unit. The hospital embarked on a multi-year project that included the key steps outlined above, resulting in a 34% decrease in hospital mortality, a 14% increase in hospice referrals, a decrease in the failure to plan and an increase in advance directive completion. Based on the West Allis experience, a resource guide was developed that provides tools and technical advice to improve and measure care that centers on identifying patient-centered goals.3
Promoting generalist and specialist level palliative care is a major step towards changing hospital culture in a manner that aligns a realistic appraisal of the disease with patient values and medical interventions. Goals of Care discussions that document patient preferences and help guide decision making should be expected for all hospitalized patients with a serious illness. One can look ahead to a time when the skill of conducting this conversation becomes a hospital credentialing requirement. This, in conjunction with a systems change approach, can help patients and families receive the right care, at the right time, in the right place.
National Quality Forum Palliative Care Measure
- Palliative and end-of-life care: percentage of patients with chart documentation of preferences for life sustaining treatments. 2010 Jan. NQMC:007590
- Palliative care for adults: percentage of patients who have treatment options, patient goals and a plan of care across care continuum documented. 2013 Nov. NQMC:009352
- Intensive Care unit (ICU) palliative care: percent of patients who have documentation in the medical record that an interdisciplinary family meeting was conducted on or before Day Five of ICU admission. 2006 Sep. NQMC:002702
- Palliative Care for Adults: Percentage of Clinicians Who Have Education and Training Regarding Palliative Care Concepts. 2013 Nov. NQMC:009348
- Palliative Care for Adults: Percentage of Clinicians Who Have Training in the Use of Scripting for Palliative Care Discussions. 2013 Nov. NQMC:009349
- Advisory Board Physician Executive Council: Realizing the Full Benefit of Palliative Care, 2013.
- Ariadne Labs. Serious illness care. Available at: www.ariadnelabs.org/programs
- Palliative Care Network of Wisconsin. Improving generalist palliative care. Available at: www.mypcnow.org/#!about1/c22s6