A Call to Action: Helping Hospice Social Workers Embrace Evidence-Based Practice Improving Hospice Documentation

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A Call To Action: Helping Hospice Social Workers Embrace Evidence-Based Practice Improving Hospice

Documentation

Home Healthcare Nurse, November/December 2011

Clinical Topic: Palliative and Hospice Care Expires: 12/31/2013

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A Call to Action: Helping Hospice Social Workers Embrace Evidence-Based PracticeImproving Hospice

Documentation

Barbara Ivanko LCSW Home Healthcare Nurse

November/December 2011

Volume 29 Number 10

Pages 612 - 620

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Abstract

Hospice programs provide interdisciplinary palliative care and services to patients with a life-limiting illness; 6 months or less if

the disease runs its normal course. Social workers have been a required part of the hospice interdisciplinary group since the

inception of the Hospice Medicare Benefit in 1983 (Department of Health and Human Services 2008), and it is impossible to

imagine hospice care without the involvement of social workers. Social workers are uniquely trained to assess the psychological

and social factors that impact well-being and intervene when the inability to cope and emotional stress further impair the

function of the patient and family.

Social workers provide information and connection to community resources and are specifically skilled in understanding how

individuals function within a larger context of family, community, and the healthcare system. Indeed, serving the patient and

family as the unit of care is a major focus of hospice care, and social work involvement is a big part of what distinguishes

hospice care from other healthcare specialties that treat patients facing the end of life.

Figure. No caption available.

Some social workers have voiced frustration with the requirement to fit hospice care into a "medical model" of care delivery,

and the increasing emphasis on documentation and operating within the parameters of the patient plan of care. One hospice

social worker wrote about this inAmerican Journal of Hospice and Palliative Care as he said goodbye to hospice social work for

these reasons (MacDonald, 2001). He wrote that he misses "the early days of hospice, when there was more time and fewer

rules, when there was less concern with documentation and regulatory oversight, the staff was smaller and close knit, and it

was easier to make meaningful contributions by just being yourself and being guided by your intuition" (p. 417).

It is time for social work professionals to view the changes within hospice and healthcare as a call to action rather than a foe

that must be fought, or fled. Hospice is no longer a grassroots community effort; it has taken center stage as a multibillion

dollar industry in a time of an aging population and a focus on cost-savings in healthcare. Accountability for how hospices spend

each penny of their daily capitated rate has increased and will continue to do so.

Hospice and Healthcare Have Changed

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The landscape of accountability for how healthcare dollars are spent has changed in recent years. In July 2011, the Office of the

Inspector General recommended that the Centers for Medicare and Medicaid Services (CMS) reduce Medicare payments for

hospice care provided in nursing facilities, citing duplication of services (Department of Health and Human Services, 2011). The

Medicare Payment Advisory Commission (MedPAC) is an independent Congressional agency that advises Congress on issues

affecting the Medicare program. In March 2010, MedPAC said this about hospice: "We do not have sufficient evidence to assess

quality, as information on quality of care is very limited" (MedPAC, 2010). Medicare's spotlight is trained on what each hospice

team member is doing and why they are doing it.

Social workers have long self-monitored using a professional model that includes licensure, self-awareness, clinical supervision,

and continuing education units; social workers are required to complete a clinically supervised internship before graduation, andthen again before attaining state licensure. Proof of ongoing education must be submitted to maintain active licensure.

However, social workers have not focused on quantifying the quality or outcomes of their interventions in specific practice

settings (Megivern et al., 2007).Decades of outcome research on talk therapy estimate that only 15% of the variance of

treatment outcomes are due to the models and method of the therapist ( Fulton, 2005) and the majority of variance in

outcomes is more related to the patient or client's strengths, resources, and motivation (Lambert & Barley, 2002). The National

Hospice and Palliative Care Organization (NHPCO) has led several initiatives to quantify the outcomes of social workers in

hospice and palliative care, most notably with the development of the Social Work Assessment Tool (Reese et al., 2006). In the

absence of any mandate, however, widespread use has not yet occurred. There is extraordinary positive word-of-mouth about

hospice care, and nationally more than 98% of families surveyed after the death of their loved one say that they would

recommend hospice to others (NHPCO, 2010). However, there are still no data that break down exactly what each member of

the interdisciplinary team contributes to this high level of satisfaction, and it is no longer sufficient to answer questions about

quality and outcomes in hospice with "the community loves us."

It Is All About Outcomes

Outcome measurement is the rallying cry for all of healthcare, and hospice is no exception. Federal health reform calls for the

development of evidence-based practice. Research indicates that evidence-based practice can increase medical effectiveness,

improve the quality of care, and reduce costs. Evidence-based practice uses findings from the outcomes of healthcareinterventions and practices, and then compares the results to the patient's or organization's baseline and to the results of

comparable providers (Bernstein et al., 2010). Consumers can already check online for quality outcomes at hospitals, nursing

homes, and home health agencies. Hospices licensed in Florida are now required to submit outcome measure, demographic,

and diagnostic information to the State of Florida Department of Elder Affairs (2010). This information can be accessed by

consumers and referral sources online. The three Florida outcome measures being reported at this stage of public reporting are:

* proportion of patients reporting a reduction of pain,

* proportion of patients receiving the right amount of pain medicine, and

* proportion of patients who would recommend hospice services to others (State of Florida Department of Elder Affairs, 2010).

A standardized set of patient outcome measures for hospice use was tested in a CMS demonstration project the New York

Quality Improvement Organization in 2010 (Medicare Quality Improvement Organization for New York State [IPRO], 2010). The

10 Assessment, Intervention, Measurement (AIM) measures tested during the demo project focused on patient outcomes and

included:

1. Percentage of patients who are assessed for physical symptoms and screened for psychological symptoms during the

admission visit;

2. Percentage of patients with comprehensive assessment completed within 5 days of admission;

3. Percentage of those patients who were positively assessed for pain for whom pain was rated as none or mild at the second

pain assessment;

4. Percentage of patients positively assessed for dyspnea at rest that showed improvement within 1 day of assessment;

5. Percentage of patients who were positively assessed for nausea that received treatment within 1 day of assessment;

6. Percentage of patients on regularly scheduled opioids that had a bowel regimen initiated within 1 day of opioid initiation;

7. Percentage of patients who screened positive for anxiety that received treatment within 2 weeks of screening;

8. Percentage of patients who had moderate-to-severe pain on a standardized rating scale at any time in the last week of life;

9. Percentage of patients with documentation in the clinical record of an advance directive or discussion that there is no

advance directive; and

10. Percentage of families reporting the hospice attended to family needs for information about medication, treatment, andsymptoms (IPRO, 2010).

The Hospice Wage Index for Fiscal Year 2012 (Department of Health and Human Services) proposes that hospices report their

results on the measure that is related to pain management by January 31, 2013. This measure is endorsed by the National

Quality Forum (NQF): The percentage of patients who were uncomfortable because of pain on admission to hospice whose pain

was brought under control within 48 hours. They also propose that each hospice also include their results on three other

indicators in their Quality Assessment Performance Improvement (QAPI) programs, and cite as examples the effective and

timely symptom management, care coordination, and patient safety.

What Does This Mean for Hospice Social Workers?

Hospice social workers must be able to measure the effectiveness of their interventions, demonstrate that those interventions

add to achievement of patient and family goals as identified in the hospice plan of care, and support their hospice's efforts to

achieve excellent, measurable quality, particularly in the areas deemed a priority by the NQF and CMS. This means compiling


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evidence that a social worker's unique skills are needed to do the job, and no one else without that education and training will

suffice. Ultimately this would lead to the aggregation of data that can contribute to the development of evidence-based

practices for social workers. Social workers must focus on the following questions:

1. What it is they are trying to accomplish with each visit? (Hint: this must be tied to the goals of care as identified by the

patient and family.)

2. What exactly the social worker is doing with the patient and the family to make progress toward those goals (i.e., process

measures of the social workers' various professional interventions)?

3. What measures can be used to indicate progress toward achieving the set of goals (i.e., standardized assessment scales)?

Although frequently documented interventions such as support, listening, and comfort are very important in interacting with a

dying person and their family, these cannot be the onlythings a social worker is doing. Professional, specialized interventions

that connect with and have an effect on problems on the plan of care are called for in modern hospice care. Putting on your

"payer source hat," remember the hospice and healthcare climate, as previously described. Look at the words again: support,

listening, and comfort. With $11 billion per year going to hospice care, could a well-trained volunteer or nurse also do these

things? In 2008, when the updated Conditions of Participation (COPs) for hospices were released, the requirement for social

work was reduced to allow for a bachelor's degree in psychology, sociology, or other field related to social work, as long as the

person was supervised by a master's in social work and had 1 year of social work experience in a healthcare setting

(Department of Health and Human Services, 2008). Although some states have more stringent requirements, this was seen by

some as "dumbing down" of the educational requirement, permitting hospices to employ bachelor-level people, sometimes

trained in fields other than social work, causing some indignation among hospice social workers. Perhaps those who take

exception to the new COPs could look at a cross-section of social worker notes at a few hospices and see if the interventions

require the skill of a social worker professional with a master's degree.

Add to this mix the continued weakness of hospices to document measurable outcomes tied to a coordinated plan of care, and

there are some compelling reasons for needing hospice social workers to stake their claim at the interdisciplinary group table

and begin documenting the unique expertise they bring to each patient and family encounter.

Where Do We Begin?

To a large extent, social workers in hospice have escaped the intense degree of professional and organizational accountability to

which home health agencies (HHAs), hospitals, and nursing homes have already adapted. The next step is to prepare to change

the way we document and, in some instances, the way we practice.

One option for hospice providers is to review the AIM measures from the CMS demonstration project as a starting point.

Although all of these measures have not been formally required for measurement by CMS, they do provide a comprehensive list

of possible measures for a hospice to include as part of their quality assessment, performance improvement (QAPI) program. In

these measures, there are numerous areas that call for a social worker or fall within a social worker's scope of practice.

Nonpharmaceutical Interventions for Psychological Symptoms and Anxiety

In most states, licensed social workers are able to screen for depression, anxiety, substance abuse, and other psychological

symptoms and illnesses. The use of standardized, validated scales (e.g., the Beck Depression Inventory, the Zung Anxiety

Scale, and the Burns Anxiety Scale; see Box 1) can be used for exploration of feelings and issues underlying these symptoms

and also provide baseline and ongoing measurement of change (Teno, 2004). The Brown University Center for Gerontology andHealth Care Research has an award-winning Web site that contains these scales and other various measurement tools for

end-of-life care (Teno, 2004). Effective use of such tools can help demonstrate that an intervention is not resulting in

improvement or progress toward the patient's goal, providing an indicator that the clinician should consider a change in

approach or another intervention. That is good practice. Social worker documentation frequently discusses "difficulty coping"

without any corresponding measurement of the specific degree of impairment, no specific identification of which interventions

are being used to help improve coping and no periodic, measurable reporting on whether the interventions are effective. Some

social workers, especially licensed social workers, are trained or can be trained to use specific clinical interventions to reduce

symptoms such as anxiety and depression. One practice that has been the subject of recent research is the practice of

mindfulness meditation. There is an increasing body of research that supports the physical and mental health benefits of

regular mindfulness practice; it might very well be the single nonpharmaceutical intervention that can produce measurable

improvements in several of the areas that cause suffering at the end of life. Originally designed to treat pain in a medical

setting (Kabat-Zinn, 1990), Mindfulness-Based Stress Reduction (MBSR) is a program that cultivates mindfulness through a

combined practice of yoga, sitting meditation, and body-scanning techniques. A recent study published in theJournal of

Neuroscience in April 2011 (Coghill et al., 2011) found that mindfulness meditation training reduced pain unpleasantness by a

remarkable 57%, and pain intensity ratings by 40%. These results compare favorably to those obtained with morphine. Pain

control is the foremost goal of patients facing the end of life and the NQF-endorsed indicator for hospice quality. If hospice

social workers can complement and potentiate the effectiveness of pain medication by assisting with and teaching mindfulness

techniques to patients, it may provide an opportunity to link the discipline to improved outcomes in this key area.

Anxiety is another of the AIM measures and has been demonstrated to improve after mindfulness training (Marks & Dar, 2000;

Mogg & Bradley, 2005). Schreiner and Malcolm (2008) investigated the usefulness of mindfulness meditation on depression,

stress, and anxiety-three symptoms that are often interconnected and mutually present in patients and families facing death.

They found that mindfulness reduced the symptoms of depression both by reducing the tendency toward rumination and by

controlling attention.

Naturally, any interventions should always be accompanied by a supportive, comforting presence. However, if support and

comfort were all it took to intervene with the psychosocial issues facing patients and families, anyone could do it-even a

well-trained volunteer or bachelor's-level sociology graduate.

Educate and Assist With Advance Directives

This is a perfect opportunity for hospice social workers to improve outcomes for their patients, families, hospice, and


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community. If every hospice social worker makes it his or her business to become an expert on state laws for advance care

planning and becomes an expert on approaching families with this difficult subject, improved outcomes on this measure locally

and nationally are inevitable. Social workers are the ideal IDG member to assume responsibility for facilitating these important

discussions as patient advocates, involving the nurses, chaplains, and doctors as needed to assure self-determined life closure

for hospice patients.

Ask for a Pain, Nausea, and Shortness of Breath Self-Rating, and Recognize Behaviors Associated With These

Symptoms and Document Them

There is one comprehensive plan of care for each patient and family, and all IDG members can participate in every problem or

symptom within their scope of practice. Social workers should be familiar with the guidelines for eligibility for the common

hospice diagnoses, and support the medical documentation of the nursing and physician staff by including observations,

inquiries, and subjective patient statements in social worker notes.

Provide Education and Manage Expectations

Facing a life-limiting illness is a frightening time for families. The family's confidence in their ability to care for the patient,

respond to emergencies, and understand the progression of the disease requires continual education and repetitive information.

Social workers should be skilled in explaining the physical and psychological symptoms of the dying process and disease

progression, be able to explain the hospice benefit in understandable language, and help the family understand what to expect

of hospice, set goals of care, and know what to do in the event of the patient's death, after-hours needs, and other common

eventualities.

Sample Notes

Here is a critique of two "real" hospice notes and a sample notes that illustrate a professional, outcome-oriented approach to

care. Notes are in narrative form, with sample notes using the assessment, intervention, response, evaluation (called AIRE)

format as it closely reflects the AIM framework.

Real note:

"SW met today with patient in her home. Patient is alert, verbal, oriented and pleasant. She is wearing her life alert and shares

that she is very comfortable being alone. She was observed using her walker. She spoke about her family, specifically her

brother who is twenty years her junior and who recently celebrated a birthday. Patient is happy with the care she is receiving

from hospice. She shares that 'today is a good day.' States that she was visited by her pastor and this is important to her. SW

offered active listening. Patient has hired aide come in the morning to fix breakfast and lunch, and hospice aide returns in the

evening to assist with dinner."

Although this may sound like a positive visit, it is difficult to discern what plan of care problem is being addressed, or what

professional intervention is being employed. It is easy to imagine the same visit being done by a volunteer instead.

This is a sample note about a visit with a caregiver who is having difficulty concentrating and sleeping because of anxiety:

* Assessment: Follow-up visit with patient's wife to assess progress with meditation techniques taught at last visit. She scored

32 on the Burns Anxiety Scale last week (severe anxiety).

* Intervention: Reviewed her compliance with the method; meditated for 10 minutes a day, 5 days of the past week using the

CD provided for guidance. Answered questions and talked about patient's experience, administered Burns test again, and

shared results.

* Response: Wife scored 28 this time, and was encouraged that she is in the "moderate" range and stated, "I am glad

something I can do myself can help." She has found that meditating right before bed is helping her worry less at night.

* Evaluation: There has been some progress with controlling anxiety that wife attributes to the technique and also to being

assured that her insurance will cover all the care provided. She agreed to try for twice a day for 10 minutes this week, and also

to attend support group at church if hospice can provide a volunteer to sit with patient.

This note clearly illustrates the clinical purpose of the visit, the intervention and the outcome. It is difficult to imagine a

volunteer making this visit.

Real note:

"Met with patient Sue and daughter Marie for routine visit. Marie is tearful, says she is crying all the time these days. SW

offered supportive presence and allowed for ventilation of feelings. Sue hugged her daughter and thanked her for taking care of

her. Family continues to decline chaplain services. Will visit again in two weeks."

This note more clearly brings to mind a professional interaction, and one can suppose that the social worker used her skills in

facilitating this communication. What is missing is quantification of crying "all the time," which might prompt a depression

screening. Also, "routine visit" is not a patient-centered reason for visiting, and the reason for visiting again in 2 weeks is not

clear.

This next sample note clearly addresses a plan of care problem on advance directives.

* Assessment: Met with patient to discuss his lack of living will. His wife has mild dementia, and his two adult children

sometimes disagree about his treatment choices, arguing with each other and with him.

* Intervention: Explained the proxy chain that would take effect should he be temporarily unable to make decisions about

surgeries or other medical interventions. He admitted that he just always assumed he would not face that, and acknowledged

that his wife might "not be having a good day" on a day she is called on to decide for him. Provided documents and the


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instruction booklet, reviewed both.

* Response: Patient said that he would be wise to "pick someone" and specify his wishes in writing. He asked for me to come

by in a few days, he may want me to facilitate a family meeting so he can explain his choices with his family "with a referee."

* Evaluation: Patient expresses understanding of his options and a desire to appoint a healthcare surrogate and execute a living

will. SW will call in two days to plan family meeting.

Problems such as advance directives and the need for education and resources are easy to quantify because they are concrete;

either the patient and family have advance directives, information or resources, or they do not.

Change Is Good

It has been said that change is inevitable, but misery is optional. The shift in hospice toward a more patient- and family-

centered process is consistent with the philosophy of hospice in its earliest days. The advent of mandatory quality measurement

and reporting will ultimately improve care, and help hospices to determine what really contributes to excellent outcomes.

Knowing what works and what does not may help hospice organizations make decisions that direct resources to areas that most

contribute to a safe, comfortable end-of-life experience.

Social workers are well-suited to serve as role models for their IDG colleagues by reviewing their practices in the hospice

setting, while supporting the rest of the team in doing the same. In this way, we can be true to hospice's roots and allow the

patient and family to show us how to best serve them, with the added confidence of knowing that we have empirical support

and data for the decisions we make in providing that care.

Standardized, Validated Measurement Tools

TIME: Toolkit Insturments to Meaure End-of-Life Care

http://www.chcr.brown.edu/pcoc/toolkit.htm

Burns Anxiety Scale

http://www.dr-jane-bolton.com/support-files/burns-anxiety-scale.pdf

Beck Depression Inventory

http://www.mydrrachel.com/docs/BeckDepressionInventory.pdf

Zung Anxiety Scale

http://www.psychresidentonline.com/zung%20anxiety.pdf

Peer Reviewers-Thank You for Your Time and Commitment to Excellence

Each year many of your home care colleagues serve as reviewers for Home Healthcare Nurse. They contribute their expertise to

assist in the peer review of manuscripts, books, and videos. The editorial staff offers a special thanks to those who served as

reviewers in 2011.

Patrice Artress, PhD, RN

Nancy Allen, BSN, RNC, CMC

Fran Baby, BA, MPA

Susan Balfour, RN, BA

Deborah S. Boroughs, MSN

Sarah Via Browning, DNP, RN-BC

Verna Benner Carson, PMHCNS, BC

Arlene J Chabanuk, MSN, RN, CDE, HCS-D

Cindy Corbett, PhD, RN

Dorothy Doughty, MN, RN, CWOCN, FAAN

Kathy Duckett RN, BSN

Cindy L. Farris, MSN, MPH, BSN, RN

Soozi Flannigan, RN, MSN, APRN-BC

Linda Flynn, PhD, RN, BC

Muriel Foos, RN

Rebecca B. Fuller, MS, RN, APRN-BC, ACHPN

Lisa Gorski, MS, APRN, BC, CRNI

Catherine Halsey, RN, BSN (CHPN)


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Wendy Hamlin, RN, MSN

Kendra Harrington, PT, DPT, MS, BCIA-G, PMDB

Marilyn D. Harris, RN, MSN, NEA-BC, FAAN

Margery Harvey-Griffith, MS, RN

Dawn Hohl, RN, BSN, MS

Jennifer Kennedy, MA, BSN, RN

Diane DeBartolomeo Mager, DNP, RNC

Margaret McDonald, MSW

Dolores Mueller, RN, MSN, CWOCN

Mary Narayan, MSN, APRN, BC, CTN

Leslie Neal-Boylan, PhD, RN, CRRN, APRN-BC, FNP

Louise Plaisance, RNC, DNS

Gladys Polzien, MSN, RN, CHPN

Cathy Sasser, RPh

Susan Sender, RN, BSN

Denise E. Skinner, RN, BSN

Rebecca B. Smarr, PT, COS-C

Marilyn Smith-Stoner, RN, PhD, CHPN

Tina Smith, RN

Elizabeth Tanner, PhD, RN

Pamela Teenier, RN, MBA, CHCE, HCS-D, COS-C

Martha Tice, MS, RN, ACHPN

Carolyn Viall, MSN, RN

Sandy Whittier, RN, BC, MSN, COS-C

Rhonda Marie Will, RN, BS, COS-C, HCS-D

REFERENCES

Bernstein, J., Chollet, B., & Peterson S. (2010). Basing healthcare on empirical evidence: Issue brief. Mathematica, (3), 1-2.

Coghill, R. C., Gordon, N. S., Kraft, R. A., Martucci, K. T., McHaffle, J. G., & Zelden, F. (2011). Brain mechanisms supporting

the modulation of pain by mindfulness meditation.Journal of Neuroscience, 31(14), 5540-5548. [Context Link]

Department of Health and Human Services. (2008). Federal register. Medicare and Medicaid Programs: Hospice Conditions of

Participation; Final Rule, 73(109), 32123-32124. Retrieved from http://edocket.access.gpo.gov/2008/pdf/08-1305.pdf[Context

Link]

Department of Health and Human Services, Office of Inspector General. (2011). Medicare hospices that focus on nursing facility

residents. Retrieved from http://oig.hhs.gov/oei/reports/oei-02-10-00070.pdf[Context Link]

Department of Health and Human Services. (2011). Medicare program: Hospice Wage Index for Fiscal Year 2012. Retrieved

from http://www.agg.com/media/interior/publications/Strang-Rissler-CMS-Issues-Ruling-[Context Link]

Fulton, P. R. (2005). Mindfulness as clinical training. In C. K. Germer, R. D. Siegel, & P. R. Fulton (Eds.). Mindfulness as

psychotherapy. New York, NY: Guilford. [Context Link]

Kabat-Zinn, J. (1990). Full catastrophe living: The program of the Stress Reduction Clinic at the University of MassachusettsMedical Center. New York, NY: Dell. [Context Link]

Lambert, M., & Barley, D. (2002). Research summary on the therapeutic relationship and psychotherapy outcome. In J. C.

Norcross (Ed.). Psychotherapy relationships that work. New York: Oxford University Press. [Context Link]

MacDonald, D. (2001). Thank you, I'm sorry, and good-bye.American Journal of Hospice and Palliative Care, 18(6), 417-419.

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Medicare Quality Improvement Organization for New York State. (2010).Aim quality measures by domain: Hospice AIM toolkit.

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Marks, I., & Dar, R. (2000). Fear reduction by psychotherapies: Recent findings, future directions. British Journal of Psychiatry,

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Mogg, K., & Bradley, B. P. (2005). Attentional bias in generalized anxiety disorder versus depressive disorder. Cognitive

Therapy and Research, 29(1), 29-45.

Medicare Payment Advisory Commission. (2010). Report to the Congress: Medicare payment policy, Part E, hospice. Retrieved

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A Call to Action: Helping Hospice Social Workers Embrace Evidence-Based Practice Improving Hospice Documentation