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adequate information regarding hospice (Casarettet al., 2004). The family and not the patient makemany hospice decisions. Many patients and familiesdo not realize the full benefit of hospice until thecare begins. The delay is usually a result of unrealis-tic treatment decisions offered by healthcareproviders that create overoptimism in patients andtheir families, or because of a failure to initiate end-of-life care plans through an advance directive orliving will (Casarett et al., 2004). Medicare has at-tempted to curb the effects of failing to initiate end-of-life care plans by requiring hospitals and physi-cians receiving payment from government entities to

In today’s society, there is an increased interest inend-of-life care. Even with this increased interest,the understanding of end-of-life care is not where

it needs to be in society and in the medical commu-nity (O’Carrol, 2002). Death and dying affects thewhole family, not just the individual who is dying.Early identification and recognition of end-of-lifecare choices heavily impacts the quality of life an in-dividual experiences during the dying process.Unfortunately, delaying end-of-life care plans iscommon. Hospice provides care for nearly 25% ofthose who die with participants spending a meager 3 weeks in hospice care (Casarett, Crowley, &Hirschman, 2004). Questions remain regarding thepresentation of hospice to patients and the impact ofthe presentation on the patient and family’s decisionto elect hospice. Physicians often provide initial in-formation regarding hospice but do not usually give

Professional Case ManagementVol. 12, No. 6, 339–344Copyright © 2007 Wolters Kluwer Health | Lippincott Williams & Wilkins

End-of-life CareImproving Quality of Life at the End of life

Stephanie K. Eues, BSN, RN, CCM

A B S T R A C TPurpose/Objectives: The purpose of this article is to identify barriers and interventions that influence quality oflife at the end of life.Primary Practice Settings(s): Primary care, acute inpatient care, case management, and end-of-life care settings.Findings/Conclusion: Death and dying affects the whole family, not just the individual who is dying. Earlyidentification and recognition of end-of-life care choices heavily influence the quality of life an individualexperiences during the dying process. Unfortunately, delaying end-of-life care plans is common. Over the years,the social structure and family structure have changed leaving many patients and families searching for viableend-of-life care options. Advancements in technology have affected the way medical professionals approach theend of life making a difficult decision for patients and families even more difficult by offering medicalinterventions that may not be necessary. To steer end-of-life care toward evidence-based practice standards, thereneeds to be additional research on the effectiveness of the various types of care available. Because casemanagers are often on the front lines of communicating and arranging end-of-life care, case managers need aclearer understanding of end-of-life care choices and how to communicate these choices to patients and families.The hospice and palliative care movements have been instrumental in increasing the understanding of end-of-lifecare and in providing patients alternatives to dying in the hospital.Implications for Case Management Practice:

• Only 25% of patients eligible for hospice actually enter hospice programs.

• The average time spent in hospice is 3 weeks.

• The most significant barrier in coordinating and providing end-of-life care is inadequate communication.

• Early discussion of prognosis and end-of-life care options helps facilitate earlier entry into hospice andpalliative care programs.

• The nursing profession needs additional research to determine the effectiveness of the various types of end-of-life care available and steer end-of-life care toward evidence-based practice standards.

Address Correspondence to Stephanie K. Eues, BSN, RN,CCM, Utilization Management at United Healthcare of theRiver Valley, 1208 Pointe Center Dr, Ste 230 Chattanooga,TN 37421 (Stephanie_K_Eues@uhc.com).

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mately 30% today (Forbes-Thompson & Gessert,2005).

CULTURE

Grief and bereavement begin at the time of diagnosiswith a terminal illness. To enhance quality of life atthe end of life, nurses and other medical profession-als must set aside their own cultural beliefs and seekto understand the patient and family’s beliefs.Culture heavily influences reactions to the dyingprocess namely pain, discomfort, and grief.Common practice is to offer terminally ill patientsthe opportunity to die at home using the assumptionthat the patient and family are more comfortable athome. Some cultures do not believe in dying athome, this is important for nurses and physicians tounderstand. In these particular cultures, if an indi-vidual dies in the home, the family either abandonsthe house or cleanses the house through a ritual cer-emony. Other cultures frown on speaking the dyingindividual’s name. With certain religions, it is im-portant to allow the clergy to anoint the dying indi-vidual or perform ritualistic sacraments on the dyingindividual. Funeral customs range from very privateto an extravagant production lasting for days(O’Carroll, 2002). The point is, all humans experi-ence death at one time or another, but that does notmean every human experience it in the same light.Misunderstanding cultural practices can createundue stress during an already difficult time. The in-crease in stress has a significant impact on the qual-ity of life of the patient and family. As a nurse and ahealthcare provider, the most important thing to re-member is to avoid making assumptions that all cul-tural practices are the same, be open to each individ-ual patient’s and family’s needs during the dyingprocess.

STANDARDS OF CARE

Technology

Technology advancements have resulted in individualsliving longer. Advancements in technology have alsocreated an environment of unrealistic expectationsand overoptimism resulting in continued medical in-terventions that do not promote quality of life at theend of life (Nelson, 2006). Aggressive treatment madeavailable by improvements in technology may becostly and unnecessary at the end of life. Although re-search shows that some of these costs are unavoid-able, the cost of dying in the hospital is significantlyhigher than the cost of dying in a nursing facility or ina hospice setting (Liu, Korbin, Weiner, & Niefeld,2006). Ultimately, the goal at the end of life should be

provide patients with information on advance direc-tives and the right to accept or refuse treatment(O’Carrol, 2002). Attitudes regarding death differwith experience and belief systems. To improve thequality of life at the end of life, medical profession-als need to consider several factors when offeringend-of-life care options, namely social and familystructure, cultural factors, financial status, pain lev-els, and life support wishes.

SOCIAL AND FAMILY STRUCTURE

Between the years 1980 and 1998, life expectancyrose 2.7 years (Harrison, Ford, & Wilson, 2005). Theincreasing life expectancy, heavily influenced by ad-vancements in technology, has affected the socialstructure of society by creating the expectation that in-dividuals will lead a healthy life well into their 80s.The expectation that individuals will live healthy livesinto their 80s has prompted the change in retirementage using the assumption that individuals will stayhealthy enough to continue to work well into their60s. This creates a problem for individuals with med-ical needs who are unable to work into their 60s re-sulting in a ripple effect on financial needs. Adding tothis problem is the change in family structure that hasoccurred over the years. The change in family struc-ture has created a need to reevaluate end-of-life careoptions. In the past, families stayed in one central lo-cation, providing support to each other in times ofneed. Now, families are scattered across the UnitedStates creating issues with the care of ill family mem-bers, end-of-life care options, and end-of-life customs.The lack of family support usually results in place-ment of the individual in nursing facilities or to acutecare facilities to die (Amelia, 2003). By the year 2020,40% of people over the age of 65 will spend the endof their life in a nursing home compared to approxi-

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…delaying end-of-life care plans iscommon. Hospice provides care fornearly 25% of those who die with par-ticipants spending a meager 3 weeks inhospice care…. The delay is usually aresult of unrealistic treatment decisionsoffered by healthcare providers thatcreate overoptimism in patients andtheir families, or because of a failure toinitiate end-of-life care plans throughan advance directive or living will.

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to promote comfort and decrease suffering by offeringthe patient and family care that meets all comfortneeds. This is accomplished by maintaining open com-munication, reducing unnecessary treatments and in-terventions, and offering realistic options regardingend-of-life choices and care (Engleberg, 2006).

End of Life and the Intensive Care Unit

For various reasons, many patients die in the ICU, buton the other hand many patients are saved in the ICU.In the critical care setting, the goal is to extend life.Critical care nurses and physicians are trained to savepatients. This becomes a problem when the patient isterminally ill and the goal should be to provide com-fort and quality of life. The ICU staff faces many chal-lenges when caring for patients at the end of life, espe-cially when the patient is on life support. Nurses andphysicians need to be more realistic in their approachto patients on life support. This can be accomplishedonly with an increased awareness and improved train-ing and resources to care for patients at the end of life(Cook, Rocker, Giacomini, Sinuf, & Heyland, 2006).Although there is still much work to be done in get-ting patients appropriate care at the end of life, thehospice and palliative movement has increased aware-ness of the problem by implementing more than 1,000inpatient palliative care programs and placing morethan 1 million patients in hospice. This movement haschanged the perception of hospice and strengthenedthe end-of-life experience by improving emotionalsupport for individuals in the hospital (Byock, 2006).

Communication

Physicians have a primary obligation to ensure thatthe best interests of the patients are considered; how-ever, in the age of managed care, physicians are alsocharged with the responsibility of ensuring that thepatient is receiving the appropriate care at the appro-priate level (Minogue, 2000). Nurses, namely casemanagers, play a critical role in discussing patientprognosis and options as it relates to hospice care(Fine, 2005). Even though the time nurses have tospend with patients has declined over recent years,

case managers interact and have more opportunitythan physicians to interact with patients. Discussionswith the patient and family soon after the rendering ofa terminal diagnosis help with acceptance and earlierentry into hospice (Turkoski, 2000; Schulman-Green,McCorkle, Cherlin, Johnson-Hurzler, & Bradley,2005).

What Do Nurses Believe?

A nationwide survey of nurses from various back-grounds revealed that most nurses believe that end-of-life care needs to be improved. Many barriers preventquality end-of-life care such as prolonged death, thenursing shortage, communication challenges, andphysician treatment decisions not in the best interestof the patient (Beckstrand, Callister, & Kirchhoff,2006). A local survey of 49 case managers involved incoordinating or providing end-of-life care providedsimilar results. Case managers indicated that the mostsignificant barrier to providing quality end-of-life careis inadequate communication. Other barriers identi-fied include family denial of death, unrealistic expecta-tions, patient denial of death, lack of family participa-tion, and uncertainty of the diagnosis or prognosis.Case managers identified pain management, commu-nication, compassionate care, and timing and fre-quency of discussions with the patient and family asmost important to maintaining quality of life at theend-of-life.

END-OF-LIFE CARE CHOICES

According to Drenning (2006), healthcare needs tomake changes to shift end-of-life care toward evi-dence-based practice standards. To steer end-of-lifecare toward evidence-based practice standards, thereneeds to be additional research on the effectiveness ofthe various types of care available. The 18thInternational Nursing Research Congress is focusingon evidence-based practice, including evidence-basedpractice standards for end-of-life care (Sigma ThetaTau International, 2007). One strategy to be dis-cussed at the conference is the effectiveness of ad-vance care planning (ACP) in helping patients expressand communicate end-of-life care preferences as wellas the impact of “personal influences, decision fac-tors, and ACP on the decision to engage in ACP”(Vander Lann, 2007, para 1). Case managers(nursesneed a clearer understanding of the legalities sur-rounding end-of-life care and advance directives.Time restraints, limited access to nursing literature,and limited computer skills are barriers to increasingthe understanding of evidence-based standards. Whenmaking end-of-life choices, dying patients consider

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Grief and bereavement begin at thetime of diagnosis with a terminal ill-ness. Ensuring optimal quality of lifeat the end of life begins with the pre-sentation and discussion of the termi-nal diagnosis.

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provides care in the home or in the inpatient setting.Physicians are usually the first to recommend and pro-vide information regarding hospice. Admission to hos-pice is usually delayed because of a lack of communi-cation, inappropriate presentation of hospice by thephysician, or inadequate information given to the pa-tient and family regarding hospice. Many physiciansdo not give adequate information regarding the pur-pose and benefit of hospice resulting in a lack of un-derstanding and delayed admission to the program(Casarett et al., 2004). It is important to present hos-pice as a concept and not a place. Hospice is availablein a variety of settings and the service is a means ofproviding medical, emotional, and spiritual care to thepatient and the family at the end of life.

Palliative Care

The Canadian Palliative Care Association definespalliative care as

a philosophy of care that provides a combinationof active and compassionate therapies intended tocomfort and support patients and families whoare living with a life-threatening illness, being sen-sitive and respectful of their religious, cultural,and personal beliefs, values, and traditions.

(O’Carroll, 2002, p. xi)

There is a misconception that palliative care isequivalent to hospice care. Although both disciplinesfocus on providing comfort to patients and familiesduring a serious illness, palliative care is available toanyone regardless of life expectancy. Palliative careis an option even when a patient is receiving curativetreatment. Palliative care services are available inhospitals, nursing facilities, clinics, and the home.The goal of palliative care is to provide symptommanagement and comfort care to patients who donot qualify for hospice services or who are not readyfor terminal care provided by hospice. Palliative carebridges the gap between curative treatment andhospice.

IMPROVING QUALITY OF LIFE

Ensuring optimal quality of life at the end of life be-gins with the presentation and discussion of the termi-nal diagnosis. The task of presenting a terminal diag-nosis is not easy. The case manager does not have topresent the diagnosis to the patient and family, but thecase manager does have the primary responsibility ofensuring that the patient understands the implicationsof the diagnosis and has access to services and benefitsto achieve optimal outcomes. To achieve optimal out-comes, which improve the quality of life for the pa-tient and his or her family at the end of life, the case

the ability to remain mentally aware, not being a bur-den on the family, helping others, establishing peacewith God, freedom from pain and suffering, andknowing that the family will carry out desired funeralarrangements strongly important (O’Carroll, 2002).Dying at home is least important to many dying pa-tients because they consider dying at home to be over-whelming. With these patients, a skilled environmentwith medical intervention is a more desirable option.Quality of life at the end of life is achieved throughshared decision-making and clear communication.Needless suffering and ignoring the dying patient’swishes, values, culture, and norms result in what pa-tients and families consider a bad death (O’Carroll,2002). End-of-life care choices are limited by theavailability of benefits or resources to pay for the ser-vice, especially for conditions unrelated to cancer.Medicare has stepped in and in an attempt to remedythis problem; Medicare has expanded hospice bene-fits to diagnoses other than cancer and lifted the 6-month life expectancy restriction (Ferrera-Reid,2004).

Hospice

Hospice services can be traced back as early as 1879when the Ireland Sisters of Charity provided care tothe dying that focused on comfort, skilled nursing in-terventions, family counseling, and spiritual needs.Today, the number of individuals hospice providescare for ranges from 25% to 43% (Casarett et al.,2004; Harrison et al., 2005). Over the years, hospicehas gained popularity because of the fragmented carepatients received after discharge from the hospital(O’Carroll, 2002). In 1983, in an effort to alleviateunnecessary or inappropriate hospital admissions andto provide compassionate care to dying individuals,Medicare and some private insurance carriers beganproviding coverage for hospice care (Amelia, 2003).An issue that remains is the limited benefit and limitedchoices in providers offered by private payers. Hospice

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The task of presenting a terminal diag-nosis is not easy. The case managerdoes not have to present the diagnosisto the patient and family, but the casemanager does have the primary re-sponsibility of ensuring that the patientunderstands the implications of the di-agnosis and has access to services andbenefits to achieve optimal outcomes.

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manager should:

1. Encourage all patients, not just patients facingend-of-life decisions, to have a living will or ad-vanced directive. Have resources and tools avail-able to make it easy to execute these documents.

2. Maintaining open communication with the pa-tient and family to identify needs and answerquestions regarding the diagnosis along with theexpected outcomes, available treatments, benefits,and alternate care settings. Since families typicallyplay a major role in making end-of-life care deci-sions, ensure that the family is present for all dis-cussions.

3. Act as a patient advocate by becoming involved atthe time of diagnosis and making certain that theentire healthcare team, including payers, under-stand the patient’s and family’s needs and wishes.

4. Coordinate all care and services, namely the facili-tation of early transition into the end-of-life careprogram that is congruent with the patient’s fam-ily structure, religious beliefs, cultural practices,and financial situation.

5. Provide support to the patient and the familythroughout the end-of-life care to monitor theeffectiveness of pain management and otherservices.

CONCLUSION

Activity has increased to improve the education ofnurses and other medical professionals, the quality ofcare available at the end of life, and the accessibilityand affordability of end-of-life care. The hospice andpalliative care movements have been monumental inincreasing the awareness of end-of-life issues and theirimportance in maintaining a good quality of life at theend of life. The success of improving end-of-life care isdependent on a collaborative effort of case managers,nurses, physicians, and other members of the medicalcommunity. Open communication within the health-care team and with the dying patient and his or herfamily is important in setting realistic expectations es-pecially when the prognosis is grim. Failure to recog-nize and accept a grim prognosis results in reducedquality of life and increased suffering during the lastdays of a dying individual’s life. The stress of accept-ing a terminal diagnosis is magnified when nurses donot understand or consider social factors, family struc-ture, and cultural practices when recommending end-of-life care. Because of their direct involvement in edu-cating patients and families regarding end-of-life careoptions, case managers play a vital role in improvingquality of life at the end of life by maintaining andpromoting open communication between the patient,

the family, and the healthcare team to ensure place-ment of the patient in the most appropriate setting.

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Beckstrand, R. L., Callister, L. C., & Kirchhoff, K. T. (2006). Providing a “good death”: Critical carenurses’ suggestions for improving end-of-life care.American Journal of Critical Care, 15(1), 38–45.Retrieved January 25, 2007, from http://www.medscape.com/524502

Byock, I. (2006). Improving palliative care in intensive careunits: Identifying strategies and interventions thatwork. Critical Care Medicine, 34(11), S302–S305.Retrieved October 26, 2006, from Ovid database.

Casarett, D. J., Crowley, R. L., & Hirschman, K. B. (2004).How should clinicians describe hospice to patients andfamilies? Journal of American Geriatrics Society,52(11), 1923–1928. Retrieved February 11, 2007, fromEBscohost database.

Cook, D., Rocker, G., Giacomini, M, Sinuf, T., & Heyland,D. (2006). Understanding and changing attitudes to-ward withdrawal and withholding life support in theintensive care unit. Critical Care Medicine, 34,S317–S323. Retrieved October 26, 2006, from Oviddatabase.

Drenning, C. (2006). Collaboration among nurses, ad-vanced practice nurses, and nurse researchers to achieveevidence-based practice change. Journal of NursingCare Quality, 21(4), 298–301. Retrieved October 26,2006, from Ovid database.

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Stephanie K. Eues, BSN, RN, CCM, is a dual master’s degree candidate at theUniversity of Phoenix. She is the Manager, Utilization Management at UnitedHealthcare of the River Valley. She can be reached at (423) 954-3457 or by e-mail at Stephanie_K_Eues@uhc.com.

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