Old Age and End Life Care
End-of-Life Planning and Choices
End-of-life (EOL) planning and decision-making (ie, choices) have been explored from myriad perspectives: patient, family, or surrogate decision maker, professional provider, informal or formal caregiver, health system costs, ethics and morality, law and regulation, barriers and facilitators, consumer and professional education needs, culture, sites of care, and organizational characteristics.
Research represents virtually all health care clinical and management domains and is widely published in peer-review journals.
The nursing
research surrounding decision-making capacity, life sustaining treatment
decisions, age and site-specific issues (eg, pediatrics, nursing homes),
clinical issues (eg, pain, change of condition), and ethical moral perspectives
on choices at the end of life, is presented here.
Health Care Perspectives
Clinicians, ethicists, and legal scholars agree that the decision to choose/appoint an other to make decisions for one in the event of loss of decision-making capacity (ie, Durable Power of Attorney for Health Care/ Health Care Proxy [HCP] ) is less risky and requires less cognitive capacity than the creation of a list of treatments desired and not desired at some point in the future regarding unknown conditions (ie, Living Will).
There is scant research on how nurses assess a patient's decisional capacity to make choices about life-sustaining treatments. Molloy et al. (1996) assessed individuals living in nursing homes, retirement homes, and homes for the aged for their capacity to create an advance directive (AD).
Five different measures of capacity were used, including assessment by a specially trained nurse and by a geriatrician independent of each other. The investigators determined that it was possible to differentiate between those who could learn about and create an AD from those who could not, using the Standardized Mini-Mental Status Examination (SMMSE).
Mezey, Teresi , Ramsey, Mitty, and Bobrowitz (2000) developed an instrument ("Guidelines") for determining if a nursing home (NH) resident had the capacity sufficient to create a HCP, that is, to choose a surrogate health care decision maker. The tool demonstrated criteria-related validity and reliability.
Data analysis indicated that many cognitively impaired residents
had this capacity. Mezey and colleagues suggest that the Guidelines are more
predictive than the MMSE in identifying such residents and could be used for
that circumscribed purpose.
Nursing Research on Dying Care
Schlegel and Shannon's (2000) descriptive study of nurse practitioners (NP) (n=145) reported that most (but not all) NPs were knowledgeable about the legal guidelines for EOL decision making but few included ACP as part of their practice.
To address this, the researchers recommended that formal didactic curricula and role modeling be included in NP education. Lehna (2001) devised and tested a needs assessment for EOL education among NP students.
Findings indicated that students were gaining knowledge, competence, and confidence from practice rather than from theory and class discussion.
Goodwin, Kiehl , and Peterson (2002) suggest that primary care nurse practitioners should use King's "interacting systems" or transaction model, and goal achievement theory, to facilitate advance care planning.
This approach has not been tested although the authors suggest that it would be good only for RNs and NPs who wanted to actively address.
EOL issues using a nursing model. For family members of NH residents, decisions about EOL care are easier when staff listen to family's fears and concerns, engage them in ACP well before a crisis or terminal event, and provide relevant information (eg, what antibiotics can and cannot do) (Wilson , SA, & Daley, 1999).
Qualitative analysis of the investigator-designed interview revealed that staff caring behaviors, family participation in decision making prior to death, knowledge of what the dying process looked like and how long it might take, being present at the time of death, and receiving spiritual support Were important for family members making difficult choices.
In a review of the
research literature about the EOL care provided in NHS and assisted living
residences (ALRS), Cartwright (2002) concluded that staff and family differ
about the kind and quality of EOL care in these settings.
Hospice Care
Hospice care can be provided in ALRS in virtually all states, but the availability of skilled nursing care and oversight is extremely variable (Mitty, 2003). Thus, an older person choosing to remain in an ALR, that is, to age in place and die there, may have to use additional private funds to access the kind of care needed at the end of life.
Few states require that ALR residents or staff be educated about ADs but many ALRS want residents to have made a decision about CPR at the time of admission. Most NHS provide "hospice like" care or have a contract with a hospice provider and all NHS must educate staff and residents about ADs.
Some NHS and most ALR for a variety of reasons-transfer
dying residents to the hospital.
Self Care Deficit Model
Orem's self-care deficit model was used to elicit factors associated with the option for patients with terminal cancer to die at home ( Grov , 1999). Self-care deficit of patient and caregiver, availability of nurses and other supports, and resources were key factors in maintaining patient autonomy.
The nurse was instrumental in identifying and facilitating patient's choices regarding self-care deficit and symptom relief. Ladd, Pasquarelli, and Smith (2000) used case based analysis to describe and discuss ethical and legal issues that arise in nursing care of patients dying at home.
The authors suggest that the nurse patient relationship in a home care setting is different, richer, and more nuanced than in the hospital setting. Dying at home means that the family has to be prepared and the nurse has to try to anticipate their disagreement with the patient's AD wishes.
Ladd et al. I propose a holistic assessment that
includes assessment of the patient's decisional authority and relationship with
significant others. They also recommend that the nurse work with the patient to
define the role of each family member in decision making-with and for the
patient.
Legal Aspects of Life Sustaining Care
Many legal scholars and ethicists hold that there is no difference, ethically or legally, between withholding or withdrawing a life-sustaining treatment (LST). To study the decision makers involved in withdrawing or withholding LSTs, Reckling (1997) directly observed and interviewed family members (n=16) and professional staff (n=29) of 10 ICU patients.
Some items from the Social Context Survey were used to measure attitude toward withdrawing and withholding LSTs. Three basic decision-making roles were identified: advocate (to withhold/withdraw LST), neutral party (will go with any position), and resistor (to withdraw/withhold LSTs).
Interrater agreement is reported with regard to the assigned role. More healthcare professionals were advocates than resistors; more family members were resistors than advocates. Nurses were the only professionals who assumed a neutral role.
Among Reckling's findings was the feeling that those who made the decision to withdraw a LST did not always carry it out; This often fell to nurses who carried out the action but claimed no responsibility for its consequences.
Some respondents felt that it was permissible to withhold a LST but were resistant to withdrawal. Factors associated with advocacy included poor prognosis, patient discomfort, attention to scare resources, and the patient's known preferences.
Factors associated with neutrality or resistance were constraints on practice, fear of legal liability, and distrust. Rackling also suggests that situational factors and or generational culture may have influenced nurses' passive role-taking.
Mezey, Kluger, Maislin , and Mittelman (1996) described the decisions made by spouses (50) of patients with Alzheimer's disease to consent to or to forgo LSTs.
Presented with two conditions-critical illness and irreversible coma spouses were asked to rate their agreement with, certainty of, and comfort with four LSTS: CPR, ventilator, feeding tube, and antibiotics.
In the face of critical illness, almost equal numbers of spouses would consent to or forgo CPR and a breathing machine; far fewer (n=5) would forgo antibiotics. Among 50 spouses, 5 chose to forgo all LSTS.
In the face of irreversible coma, spouses were more likely to forgo all LSTS and were more certain and comfortable with their decision.
Spouses experiencing high burden were more likely to consent to treatment. Few
spouses appeared to be acting under the substituted judgment standard of
decision making.
Limitation to Nursing Research
In general, there are many limitations to the research regarding EOL planning and choices. Many of the studies we reviewed were based on small and uncontrolled samples.
Design weakness can generate misleading and unrepresentative findings. Several studies discussed in this chapter suggest future research that would vary with regard to site, subject, design and methods, questions to be addressed, or interventions to be tested.
Baggs and Mick (2000) suggest that collaboration among health care providers, patients, and families could be an effective approach to ACP, given that such collaborative models have support value in community based care delivery to elders.
SA Norton and Talerico's (2000) strategies to facilitate EOL decision making include guidelines for communication, such as, clarifying goals and burdens of treatments, and using words such as "death" and "dying" in discussions with patients and families. They suggest assessing patient and family understanding and information needs.
Yet, culture studies advise caution in using the
"d" words: How should one proceed? Which nursing model, if any, can
best guide the nursing strategy? Bosek , Lowry, Lindeman, Barck , and Gwyther
(2003) outline several recommendations to promote a positive death experience
that include professional as well as patient and family education about the
physiological dying
Give your opinion if have any.