Objectives:  To understand the role that technology-enabled patient engagement and care collaboration can play to improve access and effectiveness of palliative care services, to consider potential barriers to the adoption of technology-enabled care and to assess the potential to improve outcomes and lower cost.

Methods:  We conducted a limited scope rapid review of the literature using the search terms “palliative health” and “palliative care.”  We interviewed authors of various papers and articles as well as recognized leaders in the field.  We selected the Ann Arbor Veteran’s Administration, in Ann Arbor, Michigan as our primary use case community.  We conducted more in-depth interviews with Dr. Kathi Bickel, palliative care physician at the Ann Arbor Veterans Administration and faculty at University of Michigan. 

Results:

1) Defining the palliative health care unit

According to the World Health Organization, palliative care (sometimes referred to as “palliative health”) is defined as“an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.”Without limitation, palliative health can include treatment for the following types of symptoms associated with serious illness: (Center to Advance Palliative Care, n.d.)

• Vigorous treatment of their pain and symptoms
• Relief from worry, anxiety, and depression
• Communication about their care over time
• Coordinated care throughout the multiple-year course of an illness
• Support for caregivers
• Practical support

Palliative care can be provided at the same time as treatment that is directed towards the chronic or advanced illness itself or it may follow the period of time when intensive treatment is directed towards the chronic or advanced illness as the patient and family adjust to life following initial diagnosis and treatment.  Accordingly, palliative care is often provided by clinicians and staff that are remote from and are not part of the same care team that provided services related to the underlying illness. 

Morrison, Penrod and Cassel (2008) found “by focusing on the needs of the most complex patients by matching treatments with their goals, improving their quality of life and providing support for care at home—thus helping to avoid preventable emergency hospitalizations—palliative care teams can contribute to substantial cost savings. Savings are the result of patients’ decisions to shift their care out of the hospital and into the community, usually into their own home, ultimately reducing costs.”

While most palliative care is delivered through hospitals or hospices, there is a need to expand the delivery of palliative care into the community: to the physician offices and homes where the most people with serious illnesses are found.  Research shows that outpatient and home-based palliative care is also beneficial. Palliative care integrated into a private, outpatient, oncology practice resulted in a 21% reduction in symptom burden for the patients, and increased productivity of the oncologists (Muir, et al., 2010).  Kaiser Permanente conducted a randomized control trial of their home-based palliative care system and found increased patient satisfaction, fewer emergency room visits and hospitalizations, and a greater chance of dying at home, as desired by the patient, compared to usual care.  The mean cost of care for the palliative care group was $12,670 compared to $20,222 for the usual care group (Brumely, et al., 2007).

2)  Goals of Palliative Health Care Unit

Stakeholder Objectives:

The objectives of palliative health self-care can be organized by stakeholder:

1.    Patients and Caregivers (volunteers, usually family members)

• Maximize independence and stay as healthy as possible
• Minimize physical, emotional and spiritual distress
• Reduce unnecessary hospitalizations

2.   Providers (multidisciplinary care team)

• Improve workload efficiency of care team in order to spend more time on direct patient care
• Improve care coordination among providers including the VA, as well as home health care providers and caregivers.
• Increase referrals for palliative care from other providers (i.e. primary care, oncology, or other referral sources)
• Improve quantitative performance measures
• Enroll more patients in palliative care
• Meet Meaningful Use objectives

3.    Payers (Private Insurance, Medicare, Medicaid, Veteran’s Affairs, Employers)

• Reduce overall healthcare cost 

Functional Objectives:

Functional objectives are the measurable outcomes that can be used to evaluate the progress towards achieving the stakeholder goals.  

By addressing self-management and coordination with care providers, the Palliative Health Care Unit has the following functional objectives:

• Help the patient get the care needed when it is needed, which is very important with pain management and preventing emergencies
• Engage patients and caregivers in the patient’s care to foster a sense of control and improve patient and caregiver satisfaction overall
• Promote and support caregivers as an integral part of the patient’s care team
• Reduce the number frequency and number of outpatient and emergency department visits and hospitalizations
• Improve communication among patients, caregivers and healthcare providers, in order to understand the patient’s history, current status, preferences, and needs in a timely manner and to intervene
• Educate patients and caregivers about the illness, self-management and home care, supporting the extension of evidence-based care
• Educate referral sources about the benefits of palliative care in order to enroll more patients
• Reduce unwanted, unnecessary and painful interventions
• Measure and track a patient’s symptoms in order to reduce pain and symptom burden
• Promote and support a community for patients and caregivers

 Actionable Items

Actionable items refer to the activities that can be enabled through technology that will facilitate achieving the functional objectives. (See Appendix 1 for a table mapping Actionable Items to Functional Objectives.)

Broadly stated, activities that facilitate achieving the functional objectives of palliative care include:

• Pain management
• Symptom and treatment side-effect management
  • Nausea
  • Constipation
  • Fatigue management
  • Dyspnea
• Nutrition
• Therapies
  • Physical therapy
  • Occupational therapy
• Spiritual aspects of care:
  • Connection with the chaplain
• Emotional and practical concerns
  • Connection with social worker or counselor
  • Financial guidance
  • Care coordination
  • Home health care referral
• End of life issues
  • Hospice care coordination
  • Advanced care planning
  • Bereavement
  •  

3)  Evidence-based practice and Functional requirements for the Palliative Health Care Unit

Our review of literature did not identify established evidence-based practices for palliative care.  The palliative care clinicians with whom we spoke referred more to “gold standards” of traditional care, citing the heterogeneous nature of patient needs varying greatly between underlying and individual conditions, combined with a lack of research.  Nonetheless, at least with respect to those practitioners with whom we spoke could identify functional requirements which they felt would be of value.

Patient and Caregiver

• Receive electronic symptom assessment request
• Complete electronic patient symptom assessment
• Use asynchronous secure messaging to request or cancel an appointment
• Ask a non-emergency question
• Use synchronous secure messaging (chat or video chat) to ask a question
• Secure calendar with scheduling
• Receive text-based alerts and reminders
• Respond to text-message based inquiries via text response
• View customized educational materials
• Access clinic visit and hospital discharge summaries
• Complete educational assessments
• Track goals and rewards
• Dashboard

Clinicians

• Use asynchronous secure message center (email) to
  • Respond to patient questions
  • Request information from patients
  • Send information to patients
  • Receive/view assessment
• Use synchronous secure message center (chat or video chat) to
  • Follow up with patients
  • Respond to patient questions
  • Send information to patients
  • Request information from patients
  • Telehealth consultation
• Set up customized education plan for patients
• Provide clinic visit summaries
• Use secure calendar
• Send text-based alerts and reminders to patients
• Send text-based requests to patients
• Set up follow-up reminders for self
• Provide a moderated social media environment that allows for patients and caregivers to interact with one another
• Track goals and rewards

Public content

• Provide a directory of references to community resources and services.
• Social media resources

 4) Possible barriers to the adoption of a technology-enabled Palliative Health Care Unit

 While the system must be designed to be easy to use, there are still possible barriers to use for both patients and clinicians. Such possible barriers include:

• Technology access (computer, mobile, phone, and internet access) especially in rural communities.
• Technology literacy or decreased ability to use technology due to illness.
• Tendency of veterans to not complain or to minimize issues (K. Bickel, personal communication).
• Preference for personal interaction and communication, such as combining a visit to the clinic with shopping at the PX and eating at the canteen with other veterans.
• Incorporation of technology and new processes into clinician workflow.

A 2008 study about home telehealth to support the care of veteran patients with chronic conditions found that the patient acceptance of home telehealth was high (90% accepted the service) and that their satisfaction with the services were high (86%). Once patients are enrolled in a telehealth system, they are reluctant to end using it (Darkins, et al., 2008). The program in this study successfully served patients living in rural areas. When a patient enrolled in the program, a care coordinator selected appropriate technology and trained the patient and caregiver. Another study by Luptak, et al. (2010) looked at telehealth use for monitoring symptoms and medication adherence, and for providing patient education in VA patients age 50 years or older living in rural areas (most patients were 65 or older). Eighty-four percent of patients installed the telehealth device without hands-on assistance, 88% reported no difficulty using the device, and 46% reported improved communication with their primary healthcare provider. Most used the technology on a daily basis. Thus, studies show that concerns about connectivity in rural areas, ability to use the technology, and patient satisfaction have been successfully addressed.

5)  Metrics for evaluating a technology-enabled Pallliative Health Care Unite

                 Patient and caregiver activation measures:

• The percentage of patients that log onto the system each week
• The average number of times each patient logs onto the system per week
• The number of times each symptom reporting tool is completed
• The number of times each educational material is accessed
• The number of times each tool is accessed
• The average number of messages sent per patient per week

Outcomes measures:

• The length of time between hospital admissions
• The ratio of patients to clinicians served by the palliative care clinic
• The number of patients referred to the palliative care clinic
• The average number of months a patient is served by the palliative care clinic
• The average cost per patient served per month/year
• Change in health risk and activities of daily living assessments
• Patient and caregiver satisfaction surveys

6)  Financial implications

As noted above, expanding capacity for palliative health services could save as much as $6 billion per year.  Evidence is lacking to show how much of this could be attributable to increased capacity and improved engagement and operational efficiency associated with technology.  Given that palliative health today is not a priority on par with, say, the opioid crisis, funding is a major concern.  As one leading palliative health care physician put it, “palliative care is the bastard foster child of healthcare.  From the payers’ perspective, nobody wants to own it.”  Nonetheless, it seems clear that as the society ages and demand for palliative care increases, the demand for a configurable platform for technology-enabled patient engagement and care collaboration will be critical.

Conclusion:  While today palliative health is not a high priority for provider organizations or payers, it is a safe bet that it will be in the not too distant future.  Certainly a major advance will be to conduct the necessary research to develop standards for appropriate evidence-based practice in support of a Palliative Health Care Unit.  Equally, the need for an easy to use, configurable platform that can respond to the full range of functional requirements at a modest cost will be key to an effective response.  In the meantime, the opportunity will be reserved for early adopters who are willing to allocate scare resources to securing funding and developing new models of technology-enabled evidence-based practice for the Palliative Health Care Unit.