End-of-Life Care and Family Satisfaction
Nursing Concerns Other Than Basic Care
The
nurse is uniquely positioned to provide the kind of care most needed by
patients and families at the end-of-life transition interventions that not
only promote health and healing, but also promote comfort and emotional support
for patients and their families. Middle age the nursing model, the desired
outcome at end of life is a good death.
Given the lack of research available
about the needs of dying patients and their families, nurses are not adequately
equipped to provide interdisciplinary leadership in establishing evidence-based
practice guidelines for caring for patients and families at this critical
transition.
This review reports on the evidence that exists to guide practice
and what knowledge gaps need to be addressed.
Specifically, this review focuses
on family perspectives regarding end-of-life care: how is the quality of
patient care measured and evaluated by the family at end of life; how satisfied
are decedents’ families with communication and support received at end of life;
what are the needs of families and patients and how well are these needs
ad-dressed.
Dying Family View About It
Teno
and others (2004) evaluated the United States dying experience at home and in
institutional settings. A sample of 3,275 was generated from death certificates
in 22 states. A total of 1,578 actual telephone interviews resulted in
providing national estimates of the dying experience for a target population of
1.97 million deaths in the year 2000.
The setting was predominately patients
dying in an institution (hospital or nursing facility) (67.1%) but also
included patients who died at home (32.9%). Of the group who died at home,
12.5% received nursing services, 38.2% did not receive nursing services, and
49.3% received hospice services.
The study concluded that one third of
respondents cared for by a home health agency, nursing home, or hospital
reported insufficient emotional support for the patient and/or one or more
concerns with family emotional support, compared with about one fifth of those
receiving home hospice services.
Of all categories, nursing home residents were
less likely to have been treated with respect at the end of life. Of family
members of patients who received hospice services, 70.7% rated care as
“excellent compared with less than 50% of family members of those dying in
an institution or with home health services.
The researchers noted that even
within hospice care there is a need for improvement, as 1 in 4 respondents
reported unmet needs in the management of dyspnea and in the emotional support
provided.
Patient Comfort and Family Satisfaction by Baker Study
Baker
and others (2000) examined family satisfaction regarding patient comfort,
communication, and decision making at the end of life. The participants were
surrogate respondents (97% were family members) for 767 seriously ill
hospitalized adults who died.
The study design was a prospective cohort study
with patients randomized to either usual care or to an intervention that
included clinical nurse specialists to assist in symptom control and
facilitation of communication and decision making.
The intervention was drawn
from the Study to Understand Forecasts and Preferences for Outcomes and Risks
of Treatments (SUPPORT), which evaluated interventions that increased attention
to pain, provided objective estimates of patient prognosis, facilitated
communication among medical staff, patients, and their surrogates, and
increased patient or surrogate involvement in decision making.
Sample of Research
The patient
settings were five teaching hospitals in urban areas distributed throughout the
United States. The study examined family members’ ratings of patient comfort
and communication/decision making in end-of-life care using telephone
interviews conducted 4 to 10 weeks after the date of death.
The study found
that 84% of family members expressed no dissatisfaction with patient comfort,
and 70% expressed no dissatisfaction with communication and decision making.
Examination of data revealed that the hospital site was the only factor that
was significantly related to both measures of satisfaction.
The researchers
suggested that because the structure of care and practice affected patient
satisfaction, defined quality indicators could be used to improve satisfaction.
Also, the study found that satisfaction with patient comfort decreased with
increasing impact of the patient’s illness on family finances.
The findings
suggested that those with less financial resources might have received less
comfort care. The SUPPORT interventions were significant primarily for those
patients who died after their index hospitalization.
Respondents for those that
died after the index hospitalization and had not received the interventions
were significantly less satisfied than those who had received the SUPPORT
intervention.
Study Conclusion
The study concluded that male family members were less satisfied,
but greater satisfaction was seen when patients were in less pain (Baker et
al., 2000). Stein Hauser and others (2000) gathered descriptions of the
components of a good death from patients, families, and care providers through
focus group discussions and in-depth interviews.
The sample consisted of 75
participants and included physicians, nurses, social workers, chaplains,
hospice volunteers, patients, and recently bereaved families. Six broad
components of a good death were identified: pain and symptom management, clear
decision making, preparation for death, completion, contributing to others, and
affirmation of the whole person.
The study found that for patients and
families, psychosocial and spiritual issues are as important as physiologic
concerns. For all categories, professional role distinctions were more
influential to attitudes than sex or ethnic differences. Physicians’ groups’
views differed the most from the other groups and offered the most biomedical
approach.
Prose and Cones of the Study
A weakness of this study was that researchers did not report specifics
about other professional focus groups such as nurses. Also, as the researchers
pointed out, although all socioeconomic, educational, and age groups were
represented, most patients were recruited from a Veterans Affairs medical
center and were mostly men, and as a result, these findings may not generalize
to other groups.
This literature review revealed a paucity of research on the
topic of family satisfaction and end-of-life care. It was heartening to find
that in the study by Baker and others (2000), in many areas family and patient
needs are being well met. However, satisfaction levels were not high across the
board, and other research pointed to areas where changes in practice are
needed.
The research by Stein Hauser and others (2000) begins to build a
consensus of what constitutes a good death, but a more comprehensive random
sample of patients and families (as opposed to health care professionals) is
needed to truly define this concept. The results from such a study could be
incorporated into a subsequent study that evaluates how often a good death is
actually experienced by the dying and their families.
After evaluating the
dying experience against a well-defined universal benchmark of what constitutes
a good death, it would make sense to apply various independent variables, such
as those that have been touched on in the study by Baker and others.
The
independent variables might include testing the effect of SUPPORT
interventions, examining the differences between structure of care provided by
same type institutions and then versus other types, and then determining
precisely which elements of hospice care make it so much more effective in
meeting the needs of dying patients and their families.
Another variable to be
examined is how professionals in various disciplines are educated (or not) to
address the needs of the terminally ill. This variable was touched upon in the
study by Stein Hauser and others, but much more could be done to better
understand the impact of this component.
Why Dying Care Important In Health Care
Caring
for the terminally ill is an essential aspect of professional nursing, and this
review indicates that much research still needs to be done to understand and
appropriately care for the dying and their families.