Specialized palliative care services are associated with improved short- and long-term caregiver outcomes

Goals of workThe goal of this study was to evaluate, at a population level, the association between specialized palliative care services (SPCS) and short- and long-term caregiver outcomes.Patients and methodsThe Health Omnibus Survey, a face-to-face survey conducted annually in South Australia since 1991, collects health-related data from a rigorously derived, representative sample of 4,400 households. This study included piloted questions in the 2001, 2002, and 2003 Health Omnibus Survey on the impact of SPCS. Sample size was 9,088 individuals. “Unmet needs,” a short-term outcome relevant to the caregiving period during a life-limiting illness, were tallied. “Moving on,” a long-term caregiver-defined outcome reflecting the caregiver’s adaptation and return to a new equilibrium after the death, was assessed with and without SPCS.ResultsThirty-seven percent (3,341) indicated that someone close to them had died of a terminal illness in the preceding 5 years, of whom 949 (29%) reported that they provided care. SPCS were involved in caring for 60% of deceased patients. Day-to-day caregivers indicated fewer unmet needs when SPCS were involved (p = 0.0028). More caregivers were able to “move on” with their lives when SPCS were involved than when SPCS were not involved (86 vs 77%, p = 0.0016); this effect was greatest in the first 2 years after the loved one’s death.ConclusionAt a population level, SPCS were associated with meaningful improvements in short-term (“unmet needs”) and long-term (”moving on”) caregiver-defined outcomes.

[1]  Henry Braun,et al.  The Collected Works of John W. Tukey, Volume VIII: Multiple Comparisons, 1948-1983 , 1994 .

[2]  R. Toseland,et al.  A problem solving intervention for caregivers of cancer patients. , 1995, Social science & medicine.

[3]  C. M. Parkes,et al.  'Hospice' versus 'hospital' care--re-evaluation after 10 years as seen by surviving spouses. , 1984, Postgraduate medical journal.

[4]  B. Raphael,et al.  The Bereavement Response: A Cluster Analysis , 1996, British Journal of Psychiatry.

[5]  S. Ahmedzai,et al.  A new international framework for palliative care. , 2004, European journal of cancer.

[6]  N. Christakis Social networks and collateral health effects , 2004, BMJ : British Medical Journal.

[7]  P. Koop,et al.  Factors which Influence Coping: Home-based Family Caregiving of Persons with Advanced Cancer , 2003, Journal of palliative care.

[8]  J. Benoliel,et al.  The effects of home nursing care for patients during terminal illness on the bereaved's psychological distress. , 1998, Nursing research.

[9]  D. Fairclough,et al.  Understanding Economic and Other Burdens of Terminal Illness: The Experience of Patients and Their Caregivers , 2000, Annals of Internal Medicine.

[10]  H. Prigerson,et al.  Psychiatric disorders among bereaved persons: the role of perceived circumstances of death and preparedness for death. , 2002, The American journal of geriatric psychiatry : official journal of the American Association for Geriatric Psychiatry.

[11]  Curtin Lr,et al.  Direct standardization (age-adjusted death rates). , 1995 .

[12]  J. Smit,et al.  Proxy reporting in after-death interviews: the use of proxy respondents in retrospective assessment of chronic diseases and symptom burden in the terminal phase of life , 2003, Palliative medicine.

[13]  David J. D. Wilson,et al.  The South Australian Health Omnibus Survey 15 years on: has public health benefited? , 2006 .

[14]  Laura S. Rodgers Meaning of bereavement among older African American widows. , 2004, Geriatric nursing.

[15]  Vincent Mor,et al.  Family perspectives on end-of-life care at the last place of care. , 2004, JAMA.

[16]  B. Raphael,et al.  A longitudinal study of bereavement phenomena in recently widowed elderly men , 1994, Psychological Medicine.

[17]  Bonnie K. Lind,et al.  Involvement in caregiving and adjustment to death of a spouse: findings from the caregiver health effects study. , 2001, JAMA.

[18]  S. Pantilat,et al.  Prevalence and structure of palliative care services in California hospitals. , 2003, Archives of internal medicine.

[19]  C. M. Parkes Terminal care: evaluation of in-patient service at St Christopher's Hospice. Part I. Views of surviving spouse on effects of the service on the patient. , 1979, Postgraduate medical journal.

[20]  A. Zotti,et al.  Caregiving-related needs analysis: a proposed model reflecting current research and socio-political developments. , 2003, Health & social care in the community.

[21]  D. R. Shaffer,et al.  Activity restriction and prior relationship history as contributors to mental health outcomes among middle-aged and older spousal caregivers. , 1998, Health psychology : official journal of the Division of Health Psychology, American Psychological Association.

[22]  S. Zisook,et al.  The first four years of widowhood. , 1986 .

[23]  C. Reynolds,et al.  Complicated grief as a disorder distinct from bereavement-related depression and anxiety: a replication study. , 1996, The American journal of psychiatry.

[24]  L. R. Curtin,et al.  Direct standardization (age-adjusted death rates). , 1995, Healthy People 2000 statistical notes.

[25]  K. Devery,et al.  Health Outcomes for People who use Palliative Care Services , 1999, Journal of palliative care.

[26]  M. Vachon,et al.  A controlled study of self-help intervention for widows. , 1980, The American journal of psychiatry.

[27]  K. Young 4. The Collected Works of John W. Tukey: Vol. VIII, Multiple Comparisons: 1948 , 1995 .

[28]  B. Given,et al.  The caregiver reaction assessment (CRA) for caregivers to persons with chronic physical and mental impairments. , 1992, Research in nursing & health.

[29]  K. Stetz,et al.  Alterations in perceptions of caregiving demands in advanced cancer during and after the experience. , 1992, The Hospice journal.

[30]  I. Higginson,et al.  Do specialist palliative care teams improve outcomes for cancer patients? A systematic literature review , 1998, Palliative medicine.

[31]  S. Tang,et al.  Use of Family Proxies in Quality of Life Research for Cancer Patients at the End of Life: A Literature Review , 2002, Cancer investigation.

[32]  A. Markowitz,et al.  Caring for bereaved patients: "All the doctors just suddenly go". , 2002, JAMA.

[33]  J. Tucker Moving On , 1996, A Farewell to Arms, Legs, and Jockstraps.

[34]  A. Abernethy,et al.  Specialist palliative care needs of whole populations: a feasibility study using a novel approach , 2004, Palliative medicine.

[35]  N. Christakis,et al.  The health impact of health care on families: a matched cohort study of hospice use by decedents and mortality outcomes in surviving, widowed spouses. , 2003, Social science & medicine.

[36]  M. Costantini,et al.  Psychological and symptom distress in terminal cancer patients with met and unmet needs. , 1999, Journal of pain and symptom management.

[37]  R. Morrison Palliative care outcomes research: the next steps. , 2005, Journal of palliative medicine.

[38]  S. Kaasa,et al.  The first year of grief and bereavement in close family members to individuals who have died of cancer , 2001, Palliative medicine.

[39]  I. Higginson,et al.  Development and validation of a core outcome measure for palliative care: the palliative care outcome scale. Palliative Care Core Audit Project Advisory Group. , 1999, Quality in health care : QHC.

[40]  C. M. Parkes,et al.  Terminal care: evaluation of effects on surviving family of care before and after bereavement. , 1983, Postgraduate medical journal.

[41]  I J Higginson,et al.  Evidence based palliative care , 1999, BMJ.

[42]  E. Arnold The cessation of cancer treatment as a crisis. , 1999, Social work in health care.

[43]  H. Prigerson,et al.  Depression among surviving caregivers: does length of hospice enrollment matter? , 2004, The American journal of psychiatry.

[44]  Youngmee Kim,et al.  Psychological adjustment of cancer caregivers with multiple roles , 2006, Psycho-oncology.

[45]  I. Higginson,et al.  Development and validation of a core outcome measure for palliative care: the palliative care outcome scale. Palliative Care Core Audit Project Advisory Group. , 1999, Quality in health care : QHC.

[46]  C. M. Parkes,et al.  Broken Heart: A Statistical Study of Increased Mortality among Widowers , 1969, British medical journal.

[47]  Philip Smith,et al.  Identifying the concerns of informal carers in palliative care , 1999, Palliative medicine.

[48]  J. Mandelblatt,et al.  The quality of medical care at the end-of-life in the USA: existing barriers and examples of process and outcome measures , 2004, Palliative medicine.

[49]  I. Higginson,et al.  The quality of expectation: Healing, palliation or disappointment , 2000, Journal of the Royal Society of Medicine.

[50]  C. Jepson,et al.  Effects of home care on caregivers' psychosocial status. , 1999, Image--the journal of nursing scholarship.

[51]  C. McPherson,et al.  Judging the quality of care at the end of life: can proxies provide reliable information? , 2003, Social science & medicine.

[52]  A. Edwards,et al.  Is there evidence that palliative care teams alter end-of-life experiences of patients and their caregivers? , 2003, Journal of pain and symptom management.

[53]  W. Dupont,et al.  Power and sample size calculations. A review and computer program. , 1990, Controlled clinical trials.

[54]  Hospice news , 2004, The Kansas nurse.

[55]  John W. Tukey,et al.  Multiple comparisons: 1948-1983 , 1994 .

[56]  R. Sanderman,et al.  Determinants of caregiving experiences and mental health of partners of cancer patients , 1999, Cancer.

[57]  J. Addington-hall,et al.  Which terminally ill cancer patients receive hospice in-patient care? , 1998, Social science & medicine.

[58]  D. McConnell,et al.  The relationship between available support, unmet needs and caregiver burden in patients with advanced cancer and their carers , 2005, Psycho-oncology.

[59]  J. Addington-hall,et al.  Dying from cancer: results of a national population-based investigation , 1995, Palliative medicine.

[60]  P. Maciejewski,et al.  A Call for Sound Empirical Testing and Evaluation of Criteria for Complicated Grief Proposed for DSM-V , 2006 .

[61]  D. McKenzie,et al.  Family coping and bereavement outcome , 1997, Palliative medicine.

[62]  M. Mittelmark,et al.  Health effects of caregiving: The caregiver health effects study: An ancillary study of the cardiovascular health study , 1997, Annals of behavioral medicine : a publication of the Society of Behavioral Medicine.

[63]  Christopher G. Davis,et al.  Searching for meaning in loss: are clinical assumptions correct. , 2000, Death studies.

[64]  C. M. Parkes Terminal care: evaluation of in-patient service at St Christopher's Hospice. Part II. Self assessments of effects of the service on surviving spouses. , 1979, Postgraduate medical journal.

[65]  A. Baum,et al.  End-of-life caregiving: what helps family caregivers cope? , 2003, Journal of palliative medicine.

[66]  A. Edwards,et al.  Do hospital-based palliative teams improve care for patients or families at the end of life? , 2002, Journal of pain and symptom management.

[67]  R. Schulz,et al.  Caregiving as a risk factor for mortality: the Caregiver Health Effects Study. , 1999, JAMA.

[68]  M. Luszcz A longitudinal study of psychological changes in cognition and self in late life , 1998 .