1. Palliative Care Continuum
Carri Siedlik - APRN, ACHPN
Nurse Practitioner
Advanced Certified Hospice and Palliative Nurse
Palliative Care Program
The Nebraska Medical Center

2. Death and Dying in America
Unprecedented number of older Americans with chronic illness
Technology is prolonging life but not restoring it
Exploding healthcare costs
Many uninsured
Lack of control over rising drug/device costs
Failure to treat pain and other symptoms
Meier, 2010

3. View of Advanced Illness and the Care that is Involved
Frequent emergency room visits
Increase of in-patient admissions
Futile care
Promote suffering
Increase risk of depression and anxiety
Promote complicated bereavement for family members/caregivers
Treatments continued near death may prevent/delay hospice services
Many patients with advanced cancer receive a wide-variety of chemotherapy regimens. Many with non-cancer diagnoses receive numerous treatments, prescribed for multiple medications, and provided with opportunities for technological assistance (i.e. pacemakers, ventricular access devices, dialysis, etc).
Due to the numerous side effects, these patients are frequently seen in emergency rooms and many times, admitted to the ICU or oncology units.
At what point do you ask, “Are these interventions prolonging this patient’s life?”
“Are these interventions futile?” “Are they promoting suffering for the patient and their loved ones?”
“Are they increasing the risk of depression and anxiety?”
“Are they promoting complicated bereavement for the family members/caregivers?”
“If we continue with chemotherapy (or other life-sustaining treatments), does this prevent/delay hospice services? (Greer et al., 2012)
In a study published in 2012, Greer and colleagues looked at the promotion of early palliative care and how that affected the timing of final chemotherapy administration for patients with metastatic non-small-cell lung cancer (NSCLC). In this study, the data showed those who received early palliative care had fewer odds of receiving chemotherapy 60 days before death and had higher hospice enrollment. (Greer et al., 2012)
Greer et al., 2012

4. What Constitutes Good Quality Care At the End of Life?
For Healthcare Team: Providing symptom management and discussing emotional aspects of the disease.
For Patients: Achieving a sense of control, attaining spiritual peace, succeeding in having finances in order, strengthening relationships
with loved ones, believing their life
had meaning.
In a recent study of patients with non-small-cell lung cancer (NSCLC), out patient palliative care consult teams found that symptom management was foremost in the conversations. Patients also were open to discuss emotional aspects of their disease (Jacobsen et al., 2011).
It has also been noted that patients want to achieve a sense of control for as long as they can, attain spiritual peace, succeed in having their finances in order, strengthen relationships with their loved ones, and believe that their life has had meaning (Grant & Dy, 2012).
In another study with metastatic non-small-cell lung cancer (NSCLC) patients, the data clearly showed that those patients who were randomized to receive early palliative care had:
Better quality of life than those with standard care
Decreased symptoms regarding depression
Median survival rate was long (11.6 months with early palliative care versus 8.9 months with no palliative care)
(Temel et al., 2010)
Grant & Dy, 2012; Jacobsen et al., 2011

5. Cause of Death Demographic and Social Trends
Early 1900s
Current
Medicine's Focus
Comfort
Cure
Cause of Death
Infectious Diseases
Communicable Diseases
Chronic Illnesses
Death rate
1720 per 100,000
(1900)
800.8 per 100, 000
(2004)
Average Life
Expectancy 50
77.8
Site of Death
Home
Institutions
Caregiver
Family
Strangers/
Health Care Providers
Disease/Dying
Trajectory
Relatively Short
Prolonged
Administration on Aging, 2010; Kochanek et al., 2011; Minino, et al, 2009

6. Illness/Dying Trajectories Sudden Death, Unexpected Cause
< 10% (MI, accident, etc.)
Health Status
Death
Time
Field & Cassel, 1997

7. Illness/Dying Trajectories Steady Decline, Short Terminal Phase
Health Status
Death
Time
Field & Cassel, 1997

8. Illness/Dying Trajectories Slow Decline, Periodic Crises, Death
Health Status
Crises
Death
Time
Field & Cassel, 1997

9. Toll of Death and Dying on Patients & Families/Caregivers
Patients fear they will be a physical and financial burden
If “nothing more can be done,” will healthcare providers abandon them?
How do families and caregivers adjust to role changes?
Many drain life savings and/or go bankrupt to cover medical costs
Older adults may be cared for by an aged spouse who is also ill
Older children caring for a parent may also have acute or chronic illness(es)
The toll of caring for a loved one with a life-threatening illness can be devastating for not only the patient, but for the families and caregivers.
They fear that they will be a physical and financial burden to their families.
Patients and families worry that when "nothing more can be done", their health care providers will abandon them.
Families may be uncertain about how to provide physical care and adjust to role changes (Egan-City & Labyak, 2010). Most adults prefer to be cared for at home, if terminally ill. Today, less than 1 in 4 deaths occur at home (Grant & Dy, 2012).
Many families drain life savings in order to cover costs of care for terminally ill family members (Boni-Saenz et al., 2005).
Older adult patients are often primarily cared for by their aged spouses who may have numerous chronic illnesses themselves.
Older children, with chronic or acute illness may be caring for their aged parents (e.g. 70 year-old daughter who is going through chemotherapy for colon cancer is caring for her 91 year-old father with dementia and heart disease).
Cultural Comment:
There are many components within culture that may also lead to fears and concerns about dying- ethnicity, race, gender, age, religion/spirituality, sexual orientation, differing abilities, financial status, place of residency, employment, education level and actual cause of death.
Egan-City & Labayak, 2010; Given et al., 2012

10. Overview of Caregivers: Their Commitment and The Cost
Over 44 million adults provide unpaid care to sick/disabled adults
Average of 21 hours a week
~ 33% are elderly
Most are women in their mid 40’s, working full-time
40% of women and 26% of men caregivers report emotional strain
Cost of uncompensated care = $257 B/year
Over 44 million adults, representing 21% of the adult population, provide so type of unpaid care to sick/disabled adults.
These caregivers spend an average of 21 hours/week providing care. They are the largest source of long-term-care service provider in the United States.
One-third of the caregivers are elderly.
Approximately 60% of caregivers are women and assist with labor-intensive activities such as bathing, dressing, toileting, transporting patients who are dependent. The average caregiver is a woman, in her 40’s, who works full-time and spends at least 20 hours a week with her ailing mother.
Emotional strain is evident, as 40% of women and 26% of men report this. This is a major predictor of morbidity/mortality.
If you estimated the hourly rate of a caregiver at $8/hour, this uncompensated care would be $257 B/year—more than 75% ($336 B) of the total dollars spent on Medicare in 2005.
Meier, 2010
Meier, 2010

11. Remember Patients Who Are Veterans: 96% of all Veterans Die in Non-VA Facilities
US Veterans: 23,442,000
900 WW II Veterans die a day
Veteran deaths account for almost 28% of all US deaths
Nearly 40% of enrolled Veterans live in rural communities
121,000 Veterans are without shelter or healthcare, hence no access to hospice or palliative care
Casarett 2008, NHPCO, 2011
Only 4% of Veterans die in Veteran Affairs (VA) facilities. Who cares for the other 96%?
Non-VA facilities (i.e. acute care facilities, hospices, homecare agencies, nursing homes, long-term care facilities, etc) care for the remainder of Veterans who seek healthcare.
There are over 23,442,000 US Veterans living today.
900 World War II Veterans die each day in the US. (Casarett, 2008)
Veterans deaths account for almost 28% of all US deaths. (NHPCO, 2010)
Nearly 40% of enrolled Veterans live in rural communities and this prevents many from driving to large cities, where most Veteran Affairs Medical Centers (VAMC) are located. Hospices around the US have partnered with VAMC’s and other VA facilities to provide care for these Veterans. (NHPCO, 2010). This initiative is called We Honor Veterans. For more information about this campaign, go to
Special attention must be paid to those Veterans who are without shelter and do not seek healthcare. If they are not in “the system” of receiving healthcare, then they will not be able to access hospice/palliative care services. Nurses can orchestrate care in a variety of clinical and non-clinical settings. For more information about Veterans and homelessness go to:
For more information about health issues of concern for Veterans go to:
LAUREN, here are the references:
Casarett, D., Pickard, A., Bailey, F.A., Ritchie, C., Furman, C., Rosenfeld K., et al. (2008b). Important aspects of end-of-life care among veterans: Implications for measurement and quality improvement. Journal of Pain and Symptom Management, 35(2),
National Hospice and Palliative Care Organization (NHPCO). (2010b). Reaching out: quality hospice and palliative care for rural and homeless veterans. Alexandria, VA: Author Retrieved February 13, 2012 from:

12. Changes Must Be Made: Development of Standards to Guide Practice
National Consensus Project (NCP) for Quality Palliative Care: Promotes evidence-based practices to optimize palliative care programs
National Quality Forum: Developed quantifiable quality indicators
The Joint Commission: Advanced Certification in Palliative Care
The NCP Guidelines for Quality Palliative Care, is a document that promotes optimal palliative care, by standardizing the care with the goal of improving palliative care throughout the US.
The National Quality Forum, a leader in promoting quality healthcare, adopted the NCP Guidelines and produced a document entitled: A Framework for Palliative and Hospice Care Quality Measurement and Reporting.
Launched in September 2011, The Joint Commission’s Advanced Certification Program for Palliative Care recognizes hospital inpatient programs that demonstrate exceptional patient and family-centered care and optimize the quality of life for patients (both adult and pediatric) with serious illness.

13. NCP and NQF: 8 Domains of Palliative Care
Structure and processes of care
Physical aspects of care
Psychosocial/psychiatric aspects of care
Social aspects of care
Cultural aspects of care
Spiritual, religious, and existential aspects of care
Care of the imminently dying patient
Ethical and legal aspects of care
NCP, 2013

14. Report to Congress: National Strategy For Quality Improvement in Healthcare
Palliative care compliments national aim to improve quality of care at the local/state/national level
Better Care: Must be patient-centered, reliable, accessible, safe
Affordable Care: Reduce cost for individuals, families, employers, government
The US Department of Health and Human Services (DHHS) submitted this report to Congress in March 2011.
Could palliative care be the answer to soaring healthcare costs?
With all the healthcare changes coming through the Affordable Care Act, an emphasis is on providing better and more affordable care.
Palliative care, which is centered on the physical, psychological, social and spiritual needs of patients has been shown to be reliable, accessible, and safe.
Palliative care has also decreased the cost of healthcare for those with life-limiting illness and has prevented futile treatments, prolonged intensive care/hospital stays.

15. Barriers to Quality Care at the End of Life
Failure to acknowledge the limits of medicine
Lack of training for healthcare providers
Hospice/palliative care services are poorly understood
Rules and regulations
Denial of death
Meir, 2010; NHPCO, 2011

16. What is Hospice? Definition History Services included Statistics
Hospice is a service delivery system that delivers palliative care to those who have a limited life expectancy.
Dame Cicely Saunders 1960’s St Christopher’s Hospice in London

17. What is Palliative Care?
Definition
History
Philosophy of care and an organized highly structural system for delivering care
Relief of suffering
Best quality of life
Rendered along with life prolonging treatment

18. Current Practice of Hospice and Palliative Care
Curative Treatment
Palliative Care
Hospice

19. Continuum of Care Disease-Modifying Treatment Hospice Care
Death
Disease-Modifying Treatment
Hospice Care
Palliative Care
Bereavement Support
Delineated the continuum for palliative and hospice care as the disease progresses and the patient enters into the terminal phase of illness.
Terminal Phase of Illness

20. Hospice Medicare Benefit Eligibility Criteria:
The patient’s doctor and the hospice medical director use their best clinical judgment to certify that the patient is terminally ill with life expectancy of six months or less, if the disease runs its normal course
The patient chooses to receive hospice care rather than curative treatments for his/her illness
The patient enrolls in a Medicare-approved hospice program
Patients may elect to sign off of the MHB and return to Medicare Part A and re-enroll in hospice at a later time

21. Payment for Hospice and Palliative Care
Medicare
Medicaid
Most private health insurers
Palliative Care:
Philanthropy
Fee-for-service
Direct hospital support
Hospice: Under the Medicare Hospice Benefit (MHB), a patient signs off their Medicare Part A (hospital payment), once they choose to receive hospice care rather than curative treatments, and enrolls in the MHB with direct care provided by a Medicare certified hospice agency. Similar hospice benefits are offered by Medicaid and most private health insurers.
Palliative Care: Palliative care services in the United States are paid by philanthropy, fee-for service, or from direct hospital support. Practitioners working in palliative care may bill Medicare, as well as other payers for their care, but reimbursement is low, since most services are nonprocedural. This has resulted in a recent growth in hospital palliative care services being reimbursed through hospital operating budgets. Hospitals will absorb these palliative care costs because in the long run, they save money by delivering this care to their sickest and most vulnerable patients. This prevents these patients from extended hospital and ICU stays and interventions that may be futile (Meier, 2010).

22. Stop and Consider
Which of the following patients could benefit from palliative care?
A. 64 year-old with congestive heart failure, hypertension and diabetes
B. 32 year-old with acute myelogenous leukemia
C. 57-year-old with newly diagnosed amyotrophic lateral sclerosis
D. 76 year-old with Parkinson’s disease

23. Let’s Practice: A Case Study
70 y/o woman with newly diagnosed pancreatic cancer.
Live alone. Retired school teacher.
Only Son lives in another state
Would this patient benefit from palliative care?
What services would this patient most likely need now? Support, decision making, pain and symptoms, psychological, spiritual, social needs.
If this patient were at your hospital how would these services be paid for?
Could this patient qualify for Hospice benefits?

24. Quality-of-Life Model
Physical
Functional Ability
Strength/Fatigue
Sleep & Rest
Nausea
Appetite
Constipation
Pain
Psychological
Anxiety
Depression
Enjoyment/Leisure
Pain Distress
Happiness
Fear
Cognition/Attention
Quality of Life
Social
Financial Burden
Caregiver Burden
Roles and Relationships
Affection/Sexual Function
Appearance
Spiritual
Hope
Suffering
Meaning of Pain
Religiosity
Transcendence
QOL at end of life means addressing multiple dimensions of care, Gabriel, 2008)

25. Maintaining Hope in the Midst of Death
Experiential processes
Spiritual processes
Relational processes
Rational thought processes
Remember the caregiver
Ersek & Cotter, 2010
Nurses have a unique opportunity to maintain patients’ and families’ hope by providing excellent physical, psychosocial, and spiritual palliative care
Reminiscing
Referrals

26. Tools and Resources for Palliative Care
Assessment Tools
Physical symptoms
Emotional symptoms
Spirituality
Quality of life
Caregivers outcomes

27. Prognostication Consists of 2 parts:
– foreseeing (estimating prognosis)
– foretelling (discussing prognosis)
Performance status
Karnofsky – ECOG poor predictors, multiple symptoms, biological markers (e.g. albumin)
“Would I be surprised if this patient died in the next 6 months?”
Hui, 2012

28. Stop and Consider: Prognostication
Kay, a 68-year-old woman with heart failure
Dyspnea at rest
On ACE inhibitors and beta blockers
Ejection fraction (EF) < 20%
Syncope
Resistant ventricular or supraventricular arrhythmias
Would she qualify for hospice care, given these symptoms?
The majority of patients who enter hospice are those with cancer. Yet, more people in the United States die of heart disease than of all cancers combined. For example, in 2009, 40.1% of hospice patients in the US died of cancer. This compares to 11.5% of those who died of heart disease. (Ref: Shega, J.W. & Levine, S.K. (2012). Caring for Patients with Chronic Illnesses: Dementia, COPD, and CHF. 4th edition. AAHPM: Glenview, IL, p. 80)
Would Kay qualify for hospice care, given these symptoms? MAYBE!
Here lies the problem with prognostication and determining the “6-months-or-less hospice rule.”
With these symptoms, current guidelines/literature indicate that predicting a 6- or 12-month prognosis would only promote a 50% accuracy rate (Shega & Levine, 2012).
So how does one make a clinical judgment about a patient like Kay?
#1: What are Kay’s goals of care?
#2: What is Kay’s New York Heart Association (NYHA) Functional Classification? This provides a way of classifying the extent of heart failure. For more information on NYHA Functional Classification, go to
#3: Is Kay’s quality of life more important to her than aggressively pursuing a transplant? Ventricular assist device (VAD) therapy?
#4: If Kay has NYHA class III or IV heart failure, and she requests no further hospitalizations, no consideration of transplant or VAD therapy, then she would be a candidate to discuss hospice with.
All of these issues must be discussed with the patient and her family. An advance directive must be in place.
Shega & Levine, 2012

29. Role of the Nurse in Improving Palliative Care
Some things cannot be “fixed”
Use of therapeutic presence
Maintaining a realistic perspective
Presence is a way of expressing compassionate caring
QOL is personal, there is no right way to die, be flexible

30. Extending Palliative Care Across Settings
Nurses as the constant
Expanding the concept of healing
Becoming educated (Certification, HPNA)
Nurses spend more time than any other
Early identification of palliative care needs allows patients and families to set and achieve goals
Healing: At the end of life nursing care shifts from a focus of wellness/recovery to an understanding of healing (Coyle, 2010)
HPNA helps expand nursing edu on issues. Certification is available for LPN, RN, APRN, Nurse administrator.

31. Final Thoughts…..
Quality palliative care addresses quality-of-life concerns
Increased nursing knowledge is essential
“Being with”
Importance of interdisciplinary approach to care
Since Nurses cannot practice what they do not know, increased knowledge is essential to improved patient care through nursing edu and professional development
Not only “doing For” but “being with”

32. “… touching the dying, the poor, the lonely, and the unwanted according to the grace we have received, and let us not be ashamed or slow to do the humble work.”
-Mother Teresa

33. To Comfort Always