DEEP DIVE: ADVANCED CARE PLANNING + COMMUNICATION of END OF LIFE GOALS

My work as a Physician Advisor (PA) for Utilization Management (UM), has taken me across the country, to hospitals large and small. While I wish it were different, I am no longer surprised to find there still are hospitals where coordination and communication around End-Of-Life (EOL) goals are inconsistent, fragmented, or incomplete. This leads to difficulty ensuring that the care we provide is consistent with a patient’s wishes. These system failures can impact not only the patient, but also their caregivers, the hospital Key Performance Indicators (KPI), or even the exposure to medical liability, among others. 

In my hospitalist role, there are many times that I am managing a patient who is lacking medical decision making capacity for one reason or another. I am often placed in a time sensitive situation where EOL care decisions need to be made in the next few minutes or hours. Unfortunately, when it is most needed, we are lacking critical information regarding Advanced Directives, the patient’s Health Care Advocate (HCA), and, or POST/POLST. Does this information even exist? How do we find it? Who should we be talking to? Is the HCA representative truly following their stated wishes?  For the hospitalized patient, these gaps in communication, may lead to:

• Unnecessary or undesired medical treatment and testing with,
• Increased pain, anxiety and suffering.
• Additional medical expenses and financial burden.
• Hospital overcrowding and prolonged length of stay.
• Uncertainty as to the patient’s healthcare representative with,
• Added workload to care coordination staff and nursing, attempting to identify the responsible individual.
• Prolonged hospitalization while pursuing a court-appointed legal guardian.
• Potential incorrect identification of the patient representative.
• Increased emotional burden to the family due to,
• Requiring family members to make complex on-the-spot decisions about a loved one, without knowing the patient’s wishes.
• Disagreements between family members as to the goals of treatment.
• Delays in appropriate care while attempting to obtain the needed information,
• Increased legal liability and adverse outcomes due to assigning the wrong code status. 

Under the current system, we ask the patient to keep a copy of their important documents, e.g. POST/POLST readily available and even carry a wallet sized version. Invariably when interviewing the patient in the emergency department, and asked about advanced directives, the patient or family will say “We have one at home,” but they are unable to provide the needed details or find a copy. It is encouraging to see hospitals are increasingly including these documents in the Electronic Medical Record (EMR). However, these are typically scanned documents that are hard to find, easily overlooked and may be outdated. Even the most diligent hospital will still run into problems related to patients who have recently moved to the area, or living outside the normal catchment area of the facility. I’m reminded of working in the Las Vegas area where a significant percentage of patients were from out of town, or California where the hospital served a large and migratory homeless population. Unintentionally, the structure of the EMR physician workflow for admission to the hospital may contribute to these issues. There can be a hard stop requiring an order for code status, where I cannot proceed until the issue is addressed. If there is no option to defer this step, and without all the necessary documentation, I’ll click on “FULL CODE.” Hopefully, I remember to adjust the order later if it is inconsistent with the patient’s wishes. 

In this blog, we’ll look at how we might solve some of these system issues by leveraging Artificial Intelligence (AI) to provide situational awareness through physician advisor inspired monitoring of utilization resources.  But first, let's review some of the terminology:

ADVANCED DIRECTIVE: A written statement of a person's wishes regarding medical treatment, often including a living will, made to ensure those wishes are carried out should the person be unable to communicate them to a doctor.

ALLOW NATURAL DEATH (AND): An alternative to the term Do Not Resuscitate (DNR). 

COMFORT CARE ONLY: A patient care plan that is focused on symptom control, pain relief, and quality of life. Testing and management focused on actively curing or treating a disease or illness is not pursued.

HOSPICE: Services provided to those are terminally ill (prognosis of 6 months or less if the illness follows the normal course), and desire palliation of symptoms, whether social, physical, emotional, or spiritual. The patient forgoes curative therapies.

PALLIATIVE CARE: Patients at any stage of advanced and life-threatening illness who desire palliation of symptoms, whether social, physical, emotional, or spiritual. 

POLST: The terms Portable Medical Orders, and Physician Order for Scope of Treatment (POST), are supplanting the older term of  Physician Orders for Life-sustaining Treatment. Those of us working in EOL care, recognized the term “life-sustaining,” was incongruent with the treatment plans for many of our patients. 

HEALTH CARE AGENT (HCA): The person(s) designated by the patient to speak on their behalf, if the patient has impaired medical decision making capacity.This may be a formal role such as a medical power of attorney, or court appointed guardian. In the absence of an Advanced Directive, State law and hospital policy will govern the identification of the HCA, e.g. spouse, child, parent. 

CASE 1

A  53-year-old woman residing at home, was sent to the emergency department by ambulance after her home health nurse noted the patient was sleepy and with a low blood pressure. Her past medical history included COPD, stroke and intestinal cancer. Her only home medications were those typically used for CCO and hospice. The initial evaluation included CT of the brain, other images, multiple labs, and other studies. She was described as lethargic but able to answer some questions. The team was unable to clarify her EOL goals or HCA. Due to the low blood pressure she was hospitalized as an inpatient with treatment including IV fluids and antibiotics. Her admission assessment was “ Comfort care and septic shock.”  The admitting physician acknowledged she was receiving comfort care measures at home and speculated she was in hospice.  The diagnosis qualifying her for hospice was either not known or not documented by the care team. The attending consulted case management with possible referral to hospice.  

While there are a multitude of issues raised by the hospitalization, we’ll focus on the information available to the EMS, emergency department and admitting physician. For whatever reason, they lacked information regarding the patient’s HCA, POST/POLST, enrollment in hospice and desires for hospitalization. The treatment plan did not match the standard treatment for either comfort care or septic shock, but rather was a middle ground between the two. Reading between the lines, the goal was to hospitalize the patient and have care coordination figure it out the next day. 

CASE 2

60 year-old with Squamous Cell Cancer (SCC) of the lung with metastasis to bone and brain. He had recently developed seizures due to the metastatic disease to the brain. Over the course of four months he went from independent in all daily activities, to requiring assistance with basic activities including bathing and walking. The patient submitted a POST/POLST requesting AND/DNR. One month later, he presented to the emergency department with a seizure. Multiple labs and imaging studies were obtained, confirming his metastatic SCC, including three brain lesions that showed interval increase in size. In addition he was found Covid-19 positive, but not requiring treatment. The patient was discharged with no change in treatment and no discussion regarding goals of care, code status, hospice options, etc. Three weeks later he returned again with a seizure and returned to baseline while in the ED. Again, multiple labs and images were obtained, showing the cerebral mets. The patient was alert, oriented and expressed the desire to be enrolled in hospice. He was admitted for arranging this. On hospital day 2, the palliative care team obtained a copy of his POST/POLST.

While there are a multitude of issues identified by this case, we will focus on the issues related to EOL management. The patient had a completed POST/POLST, but not immediately available to the treatment team. Therefore, the attending felt obligated to admit this patient to clarify the goals and consult hospice. Due in part to the lack of information available at the time of his transport to the ED, this patient underwent potentially unnecessary testing and treatment twice, along with an inappropriate admission to arrange hospice services. An added issue with this case was his Covid-19 diagnosis. His unnecessary ED visit, exposed multiple individuals to the virus.

CASE 3 

A 67 year-old man with a history of alcohol induced cirrhosis, active alcohol use, COPD and other medical issues, presented with acute hypoxemic respiratory failure due to Covid-19. The initial evaluation showed a patient with multiple lab abnormalities, and stigmata of end-stage liver disease. He did not require intubation, but was admitted to an intermediate care unit for treatment of the viremia and hypoxia. On hospital day 5, he rapidly declined, was intubated, and transferred to the ICU. During multidisciplinary rounds, it was discovered that code status had not been discussed, there was not POST/POLST on file in the hospital EMR, and no next of kin were listed. Over the next month, he had multiple complications, underwent several procedures, including repeated paracentesis, thoracentesis, tracheostomy and central line. A percutaneous feeding tube was not placed due to the concern that because of his coagulopathy and thrombocytopenia, he was a high risk for bleeding with the procedure. Gastroenterology was also concerned about persistent drainage of ascites due to his rapid accumulation requiring frequent paracentesis. The care coordination team was ultimately able to identify a brother in Canada, who provided input to the team regarding EOL care. Based on the families input, he was placed on CCO, and terminally extubated on hospital day 68.

This case emphasizes the need for early discussions about not only code status but other aspects of POST/POLST. Based on his cirrhosis alone, the patient met palliative care screening criteria at the time of admission. The failure to address EOL care and a lack of knowledge as to the identity of his HCA, led to a prolonged hospitalization, multiple potentially unnecessary interventions, and significant suffering. 

SOLUTION: Thankfully, we have seen the rise of Health Information Exchanges (HIE). These allow doctors, nurses, pharmacists, other health care providers and patients to appropriately access and securely share a patient’s vital medical information electronically—improving the speed, quality, safety and cost of patient care. For example, when working as a hospitalist in Michigan, I can access critical patient information from dozens of hospitals and hundreds of clinics. Most importantly, this information is shared between rival health care systems, and differing EMRs. 

Taking this one step further, we propose a FHIR based structure delivering critical information such as POST/POLST on a need to know basis, anywhere in the country. Why FHIR? As a secure, HIPPA compliant data standard - that’s based on a modern web services approach and is compatible with all healthcare EMRs - makes it easier for systems to exchange specific, well-defined pieces of information. Now mandated, the CURES Act is a national policy that requires healthcare providers to give patients access to all of their health information in their EMR’s “without delay” and without charge.

CMS, in partnership with the Office of the National Coordinator for Health Information Technology (ONC), has identified Health Level 7® (HL7) Fast Healthcare Interoperability Resources® (FHIR) Release 4.0.1 as the foundational standard to support data exchange via secure application programming interfaces (APIs). CMS is adopting the standards for FHIR-based APIs being finalized by HHS in the ONC 21st Century Cures Act rule at 45 CFR 170.215. These requirements support the privacy and security of patient information.

While the terms may vary from state-to-state, the core elements of a POST/POLST remain the same. The treating physicians and care team need to know what services the patient wishes to receive, which to forgo, and who is authorized to speak on their behalf if they are unable to speak for themselves. When a POST/POLST is completed and entered into a health system EMR, or through such advocacy groups as Five Wishes, or National POLST organization, patients would have the option of allowing access through a secure national HIE, to this critical information on a need-to-know basis.

Two processes are envisioned:

1. Push Notification: FHIR Resource trigger of an Emergency Department (ED) registration or admission order, leading to a query of the centralized clearinghouse of POST/POLST information.
2. On Demand Access: For individual practitioners and certain outpatient settings, such as home healthcare agencies, primary care offices, or EMS teams, the information would be accessed through a national web-based, HIPPA compliant clearinghouse.

We acknowledge that EOL care decisions can and do change over time, and that no database or process will be 100% accurate. However, at a minimum, the information provided through this proposed structure would provide a starting point for discussions . Hospitals and clinicians will still need to take reasonable steps to validate the information with patients and their HCA.

CONCLUSION: High levels of resource use and unnecessary hospital-based care are commonly provided to the terminally ill patient, due to the treatment team’s lack of knowledge regarding the patient’s EOL care plan. This is especially true when uncertainty exists around code status, or who should act as the patient’s HCA.  Much has been done to educate people regarding the need to have an advanced care plan in place. These plans may be reflected in an advanced directive,  POST/POLST form, or some other vehicle. The last decade has seen these forms become a familiar site to working in healthcare. However, there seems to have been less effort given to ensuring that patients have the information readily available to physicians when it is most needed. The benefits of having immediate access to critical information regarding POST/POLST and EOL wishes, is clear and compelling. Now with the near universal adoption of FHIR on the forefront of developing solutions, we have the capability for all hospitals and healthcare settings to have real-time access to this information utilizing a FHIR based AI App, like CART developed by SAPHUR Healthcare which stands for Continuous, Actionable, Resource, Triggers.

ORGANIZATIONS: 

https://www.himss.org/ Healthcare Information and Management Systems Society

Health Information Exchanges. https://www.healthit.gov/topic/health-it-and-health-information-exchange-basics/what-hie

National Hospice and Palliative Care Organization, https://www.nhpco.org/, 

Center to Advance Palliative Care https://www.capc.org/

American Academy of Hospice and Palliative Medicine http://aahpm.org/.

Five Wishes https://www.fivewishes.org/ 

ONC 21st Century Cures Act final rule, visit, https://healthit.gov/curesrule

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