Advance Care Planning in terminally ill and frail older persons.

OBJECTIVE Advance Care Planning (ACP) - the communication process by which patients establish goals and preferences for future care - is encouraged to improve the quality of end-of-life care. Gaining insight into the views of elderly on ACP was the aim of this study, as most studies concern younger patients. METHODS We conducted and analysed 38 semi-structured interviews in elderly patients with limited prognosis. RESULTS The majority of participants were willing to talk about dying. In some elderly, however, non-acceptance of their nearing death made ACP conversations impossible. Most of the participants wanted to plan those issues of end-of-life care related to personal experiences and fears. They were less interested in planning other end-of-life situations being outside of their power of imagination. Other factors determining if patients proceed to ACP were trust in family and/or physician and the need for control. CONCLUSIONS ACP is considered important by most elderly. However, there is a risk of pseudo-participation in case of non-acceptance of the nearing death or planning end-of-life situations outside the patient's power of imagination. This may result in end-of-life decisions not reflecting the patient's true wishes. PRACTICE IMPLICATIONS Before engaging in ACP conversations, physicians should explore if the patient accepts dying as a likely outcome. Also the experiences and fears concerning death and dying, trust and the need for control should be assessed.

[1]  E. Bradley,et al.  What matters to seriously ill older persons making end-of-life treatment decisions?: A qualitative study. , 2003, Journal of palliative medicine.

[2]  Douglas K. Martin,et al.  Planning for the end of life , 2000, The Lancet.

[3]  Alan D. Lopez,et al.  Mortality by cause for eight regions of the world: Global Burden of Disease Study , 1997, The Lancet.

[4]  Eva Kahana,et al.  The Personal and Social Context of Planning for End‐of‐Life Care , 2004, Journal of the American Geriatrics Society.

[5]  James A Tulsky,et al.  Interventions to enhance communication among patients, providers, and families. , 2005, Journal of palliative medicine.

[6]  O. O’neill Autonomy and Trust in Bioethics: Bibliography , 2002 .

[7]  B. Onwuteaka-Philipsen,et al.  Advance Directives in the Netherlands: An Empirical Contribution to the Exploration of a Cross‐Cultural Perspective on Advance Directives , 2010, Bioethics.

[8]  S. Fazel,et al.  Assessment of competence to complete advance directives: validation of a patient centred approach , 1999, BMJ.

[9]  P. Maciejewski,et al.  Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment. , 2008, JAMA.

[10]  C. Whitlatch,et al.  Consistency of information from persons with dementia , 2008 .

[11]  A. Sixsmith,et al.  The end of life: a qualitative study of the perceptions of people over the age of 80 on issues surrounding death and dying. , 2007, Journal of pain and symptom management.

[12]  J. Diamond,et al.  Ask a different question, get a different answer: why living wills are poor guides to care preferences at the end of life. , 2010, Journal of palliative medicine.

[13]  L. Deliens,et al.  End-of-Life Decision-Making and Terminal Sedation among Very Old Patients , 2008, Gerontology.

[14]  L. Iannone,et al.  Understanding Advance Care Planning as a Process of Health Behavior Change , 2009, Journal of the American Geriatrics Society.

[15]  Laura J. Morrison,et al.  Palliative care for the older adult. , 2007, Journal of palliative medicine.

[16]  J. Carline,et al.  Dying patients' need for emotional support and personalized care from physicians: perspectives of patients with terminal illness, families, and health care providers. , 2003, Journal of pain and symptom management.

[17]  Older people's reasoning for resuscitation preferences and their role in the decision-making process. , 2005, Resuscitation.

[18]  A. Gafni,et al.  Understanding cardiopulmonary resuscitation decision making: perspectives of seriously ill hospitalized patients and family members. , 2006, Chest.

[19]  I. Higginson,et al.  Better palliative care for older people , 2004 .

[20]  M. Hamel,et al.  Elderly Persons' Last Six Months Of Life: Findings from the Hospitalized Elderly Longitudinal Project , 2000, Journal of the American Geriatrics Society.

[21]  R. Pearlman,et al.  Good Deaths, Bad Deaths, and Preferences for the End of Life: A Qualitative Study of Geriatric Outpatients , 2002, Journal of the American Geriatrics Society.

[22]  J. Herlitz,et al.  Should cardiopulmonary resuscitation be performed on patients with heart failure? The role of the patient in the decision‐making process , 2000, Journal of internal medicine.

[23]  S. Goodrich,et al.  A Piece of My Mind , 2014 .

[24]  Jane C Weeks,et al.  End-of-life discussions, goal attainment, and distress at the end of life: predictors and outcomes of receipt of care consistent with preferences. , 2010, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[25]  D. Heyland,et al.  Determining resuscitation preferences of elderly inpatients: a review of the literature. , 2003, CMAJ : Canadian Medical Association journal = journal de l'Association medicale canadienne.

[26]  T. Finucane,et al.  Planning for death but not serious future illness: qualitative study of housebound elderly patients , 2002, BMJ : British Medical Journal.

[27]  M. King,et al.  The development of a questionnaire to assess the attitudes of older people to end-of-life issues (AEOLI) , 2005, Palliative medicine.

[28]  H. Wijk,et al.  Needs of Elderly Patients in Palliative Care , 2008, The American journal of hospice & palliative care.

[29]  M. Mezey,et al.  Advance directives: older adults with dementia. , 2000, Clinics in geriatric medicine.

[30]  M. Gillick Decision making near life's end: a prescription for change. , 2009, Journal of palliative medicine.

[31]  J. Lynn,et al.  Profiles of Older Medicare Decedents , 2002, Journal of the American Geriatrics Society.

[32]  D. Schillinger,et al.  A Clinical Framework for Improving the Advance Care Planning Process: Start with Patients' Self‐Identified Barriers , 2009, Journal of the American Geriatrics Society.

[33]  A. Thorns,et al.  Evaluation and ethical review of a tool to explore patient preferences for information and involvement in decision making , 2006, Journal of Medical Ethics.

[34]  William M. Tierney,et al.  The effect of discussions about advance directives on patients’ satisfaction with primary care , 2007, Journal of General Internal Medicine.

[35]  D. Meier,et al.  Assessing differences in care needs and service utilization in geriatric palliative care patients. , 2002, Journal of pain and symptom management.

[36]  A. Gafni,et al.  What matters most in end-of-life care: perceptions of seriously ill patients and their family members , 2006, Canadian Medical Association Journal.

[37]  P. Butow,et al.  www.mja.com.au Supplement , 2007 .

[38]  E. Cherniack,et al.  Increasing use of DNR orders in the elderly worldwide: whose choice is it? , 2002, Journal of medical ethics.

[39]  J. Tulsky Decision-making in serious illness: a matter of life, death and words. , 2010, Patient education and counseling.

[40]  Richard E Thompson,et al.  When patients lack capacity: the roles that patients with terminal diagnoses would choose for their physicians and loved ones in making medical decisions. , 2005, Journal of pain and symptom management.

[41]  L. Deliens,et al.  End-of-life decisions among cancer patients compared with noncancer patients in Flanders, Belgium. , 2006, Journal of Clinical Oncology.

[42]  D. Meier,et al.  High rates of advance care planning in New York City's elderly population. , 2004, Archives of internal medicine.