@ragomgar

RETITULANDO……

PLANIFICACIÓN ANTICIPADA DE DECISIONES

DEL ¿POR QUÉ?

AL ¿PARA QUÉ?

PASANDO POR EL ¿CÓMO?

PARA ACABAR EN OTRO ¿POR QUÉ?

https://www.juntadeandalucia.es/salud/rv2/inicioProfesional.action

ALGUNOS DATOS DEL REGISTRO DE VVA DE LA JUNTA DE ANDALUCIA

ALGUNOS DATOS DEL REGISTRO DE VVA DE LA JUNTA DE ANDALUCIA

ALGUNOS DATOS DEL REGISTRO DE VVA DE LA JUNTA DE ANDALUCIA

LOS DATOS GENERAN PREGUNTAS….¿CÚALES?

¿ POR QUÉ?

Do Advance Directives Provide Instructions That Direct Care? Teno JM, Licks S, Lynn J, Wenger N, Connors AF, Phillips RS, et al. Journal of the American Geriatrics Society. 1 de abril de 1997;45(4):508-12.

OBJECTIVE: To evaluate whether the lack of effect of advance directives (ADs) on decision-making in SUPPORT might arise, in part, from the content of the actual documents. PATIENTS: A total of 4804 patients with at least one of nine serious illnesses were admitted to five teaching hospitals in the 2 years following implementation of the Patient Self-Determination Act. Patients were part of a randomized controlled trial to improve decision-making and outcomes. RESULTS: From the medical records of 4804 patients, a total of 688 directives were collected from 569 patients. The majority of these directives (66%) were durable powers of attorney; in addition, 31% were standard living wills or other forms of written instructions (3%).

Only 90 documents (13%) provided additional instructions for medical care beyond naming a proxy or stating the preferences of a standard living will. Only 36 contained specific instructions about the use of life-sustaining medical treatment, and only 22 of these directed forgoing life-sustaining treatment in the patient's current situation. For these, the treatment course was consistent with the instruction for nine patients. In two cases,

patients may have changed an inconsistent directive after discussion with hospital staff.

CONCLUSION: Advance directives placed in the medical records of seriously ill patients often did not guide medical decision-making beyond naming a healthcare proxy or documenting general preferences in a standard living will

format. Even when specific instructions were present, care was potentially inconsistent in half of the cases.

Schroeder SA. The Legacy of SUPPORT. Ann Intern Med. 16 de noviembre de 1999;131(10):780-2. http://www.geripal.org/2010/11/legacy-of-support-15-years-later.html

November 2010 marks the 15th anniversary. The failure of the intervention to improve end of life care and the strikingly poor quality of end of life care documented by SUPPORT led to calls for action in the lay media and by advocates of better end of life care. SUPPORT remains the most influential study of end of life care ever published, and with over 1300 citations in the peer-reviewed literature, by far the most cited. The SUPPORT intervention study randomized over 4000 patients hospital at 5 US hospitals to usual care

The effect of this intervention? NADA. Nothing. There was no impact on each of these

key outcome measures:

• Earlier writing of DNR orders

• Physicians knowledge of their patients' preferences for CPR

• Number of days spent in an ICU before death

• Patient reports of moderate or severe pain

• Use of hospital resources

¿ PARA

QUÉ?

2. FACTORES QUE INTERVIENEN EN LA EJECUCIÓN DE LA DECISIÓN DEL PACIENTE EN SITUACIÓN

TERMINAL SOBRE EL LUGAR DONDE MORIR:

Tanto para el paciente oncológico como no oncológico si se han publicado estudios sobre los factores que influyen en que realmente llegado el

momento el paciente pueda fallecer donde había decidido, entre los que hemos diferenciado tres categorías:

* Recursos personales (Tener realizadas voluntades anticipadas, testamento vital, actitud ante la enfermedad/

Edad/Conocimiento de la enfermedad).

**Recursos sociales (Apoyo social/ Persona Cuidadora/ Acuerdo entre Paciente-Persona Cuidadora).

***Recursos sanitarios (Apoyo médico (Equipo multidisciplinar) / Equipo de Cuidados Paliativos).

III. EXPERTOS EN CUIDADOS PALIATIVOS. MÁLAGA, MARZO 2014 10

III. EXPERTOS EN CUIDADOS PALIATIVOS: UNIVERSIDAD DE MÁLAGA

TRABAJO FIN DE EXPERTOS PRESENTADO POR: ROCIO PULIDO LUQUE

TUTORA: DÑA. MARIA ROSARIO CASTILLO MORA. MARZO, 2014

FACTORES QUE DETERMINAN DÓNDE PREFIEREN MORIR LOS

PACIENTES ONCOLÓGICOS/ NO ONCOLÓGICOS EN SITUACIÓN

TERMINAL

End-of-life care discussions among patients with advanced cancer: a cohort study . Mack JW, Cronin A, Taback N, Huskamp HA, Keating NL, Malin JL, et al.. Ann Intern Med. 2012 Feb 7;156(3):204–10.

To evaluate the incidence of EOL care discussions for patients with stage IV lung or colorectal cancer and where, when, and with whom these discussions take place. DESIGN: Prospective cohort study of patients diagnosed with lung or colorectal cancer from 2003 to 2005.

SETTING: Participants lived in Northern California, Los Angeles County, North Carolina, Iowa, or Alabama or received care in 1 of 5 large HMOs or 1 of 15 Veterans Health Administration

sites.

PATIENTS: 2155 patients with stage IV lung or colorectal cancer. 73% of patients had EOL care discussions identified by at least 1 source. Among the 1470 patients who died during follow-up, 87% had EOL care discussions, compared with 41% of the 685 patients who were alive at the end of follow-up. Of the 1081 first EOL care discussions documented in records, 55%

occurred in the hospital. Oncologists documented EOL care discussions with only 27% of their patients. Among

959 patients with documented EOL care discussions who died during follow-up, discussions took place a median of 33 days before death.

LIMITATIONS: The depth and quality of EOL care discussions was not evaluated. Much of the information about discussions came from surrogates of patients who died before baseline interviews could be obtained.

CONCLUSION:

Although most patients with stage IV lung or colorectal cancer discuss EOL care planning with physicians before death,

many discussions occur during acute hospital care, with providers other than oncologists, and late in the course of illness.

Associations Between End-of-Life Discussion Characteristics and Care Received Near Death: A Prospective Cohort Study Mack JW, Cronin A, Keating NL, Taback N, Huskamp HA, Malin JL, et al.. J Clin Oncol. 10 de diciembre de 2012;30(35):4387-95.

We sought to evaluate the extent to which EOL discussion characteristics, such as timing, involved providers, and location,

are associated with the aggressiveness of care received near death.

Patients and Methods: We studied 1,231 patients with stage IV lung or colorectal cancer in the Cancer Care Outcomes

Research and Surveillance Consortium, a population- and health system–based prospective cohort study, who died during

the 15-month study period but survived at least 1 month. Our main outcome measure was the

aggressiveness of EOL care received.

Results : Nearly half of patients received at least one marker of aggressive EOL care, including

chemotherapy in the last 14 days of life (16%), intensive care unit care in the last 30 days of life (9%), and acute hospital-

based care in the last 30 days of life (40%). Patients who had EOL discussions with their physicians

before the last 30 days of life were less likely to receive aggressive measures at EOL, including

chemotherapy (P = .003), acute care (P < .001), or any aggressive care (P < .001). Such patients were also more

likely to receive hospice care (P < .001) and to have hospice initiated earlier

(P < .001).

Early EOL discussions are prospectively associated with less

aggressive care and greater use of hospice at EOL.

The impact of advance care planning on end of life care in elderly patients: randomised controlled trial. Detering KM, Hancock AD, Reade MC, Silvester W. BMJ [Internet]. 2010 [cited 2015

Aug 5];340. http://www.ncbi.nlm.nih.gov/pmc/articl es/PMC2844949/

Interventions Participants were randomised to receive usual care or usual care plus facilitated advance care planning. Advance

care planning aimed to assist patients to reflect on their goals, values, and beliefs; to consider future medical treatment preferences; to appoint a surrogate; and to document their wishes.

Main outcome measures The primary outcome was whether a patient’s end of life wishes were known and

respected. Other outcomes included patient and family satisfaction with hospital stay and levels of stress, anxiety, and depression in

relatives of patients who died.

Results 154 of the 309 patients were randomised to advance care planning, 125 (81%) received advance care planning, and 108 (84%) expressed

wishes or appointed a surrogate, or both. Of the 56 patients who died by six months, end of life wishes were much more likely to be known and followed in the intervention group (25/29, 86%) compared with the

control group (8/27, 30%; P<0.001). In the intervention group, family members of patients who died had significantly less stress

(intervention 5, control 15; P<0.001), anxiety (intervention 0, control 3; P=0.02), and depression (intervention 0, control 5; P=0.002) than those of the control patients. Patient and family satisfaction was higher in the intervention group.

Conclusions Advance care planning improves end of life care and patient and family satisfaction and reduces stress, anxiety, and depression in surviving relatives. Advance care planning improves end of life care and patient and family satisfaction and

reduces stress, anxiety, and depression in surviving relatives.

El ¿CÓMO? Va saliendo en este color

Patient Care Planning Discussions for Patients at the End of Life: An Evidence-Based Analysis. Ont Health Technol Assess Ser Baidoobonso S.. 1 de diciembre de 2014;14(19):1-72.

A systematic literature search was conducted in MEDLINE, Embase, CINAHL, and EBM Reviews to identify relevant literature published between January 1, 2004, and October 9, 2013.

Results: While the effects of PCPDs on QoL are unclear, single-provider PCPDs were associated with family members being very satisfied with EoL care (odds ratio [OR]: 5.17 [95% CI: 1.52, 17.58]), improved

concordance between patients’ and families’ wishes (OR: 4.32, P < 0.001), fewer episodes of hospital care (mean difference [MD]: −0.21, P = 0.04), spending fewer days in hospital (MD: −1.8, P = 0.03), and receiving hospice care (OR: 5.17 [95% CI: 2.03, 13.17]). Team-based PCPDs were associated with greater patient satisfaction (standardized mean difference [SMD]: 0.39 [95% CI: 0.17, 0.60]) and fewer outpatient visits (MD: −5.20 [95% CI: −9.70, −0.70]).

Overall, PCPDs were associated with more ACP and more optimal health care use. Limitations : Most of the RCTs were unblinded, intervention was measured or described inadequately in some studies, and the term “usual care” was often undefined.

Conclusions: Patients at the EoL and their families benefited from PCPDs. Furthermore, PCPDs occurring earlier in the course of illness were associated with better outcomes than those occurring later.

Advance care planning in cystic fibrosis: Current practices, challenges, and opportunities. Dellon EP, Chen E, Goggin J, Homa K, Marshall BC, Sabadosa KA, et al. J Cyst Fibros. 2015 Sep 8;

We reviewed 210 deaths among 67 CF care programs. Median age at death was 29 years (range 18-73). Median FEV1 in the year preceding death was 33% predicted (range 13-100%); 68% had severe lung disease with FEV1<40% predicted. ACP was documented for 129 (61%), often during hospitalization (61%).

Those with ACP had earlier documentation of treatment preferences, before the last month of life (73% v. 35%; p=<0.01). Advance directives were completed by 93% of those with ACP versus 75% without (p<0.01); DNR orders and health care proxy designation occurred more often for those with ACP.

Patients awaiting lung transplant had similar rates of ACP as those who were not (67% v. 61%; p=0.55). The frequency of ACP varied significantly among the 29 programs contributing data from four or more deaths. CONCLUSIONS:

ACP in CF often occurs late in the disease course. Important decisions default to surrogates when opportunities for ACP are missed. Provision of ACP varies significantly among adult CF care programs. Careful evaluation of opportunities to enhance ACP and implementation of recommended approaches may lead to better practices in this important aspect of CF care.

Sources of Stress for Family Members of Nursing Home Residents with Advanced Dementia Givens JL, Lopez RP, Mazor KM, Mitchell SL.. Alzheimer Dis Assoc Disord [Internet]. 2012 Jul ;26(3):254–9.

Available from: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3288670/

The sources of stress for families of nursing home (NH) residents with advanced dementia have not

been well described. Semi-structured interviews were conducted with 16 family members previously enrolled in the Choices, Attitudes and Strategies for Care of

Advanced Dementia at the End-of-Life (CASCADE) study, a prospective cohort of 323 NH residents with advanced dementia and their family

members. Questions inquired about the experience of having a family member in the NH, communication with health care professionals,

surrogate decision-making, emotional distress and recommendations for improvement in care. Transcripts were analyzed using the constant

comparative method. The majority of participants were female (63%), children of the resident (94%) and white (94%). The average age was 62

years.

Four themes emerged:

1) inadequate resident personal care, resulting in family member vigilance and participation in care

2) stress at the time of NH admission;

3) lack of communication with NH physicians; and

4) challenges of surrogate decision making, including the need for education to support advance care

planning and end-of-life decisions.

Our results support the provision of emotional support to families upon resident admission,

education regarding prognosis to guide decision making, improved resident care and greater

communication with health care professionals.

Communication regarding care is rarely patient driven and more often professional caregiver or family driven. The level of congruence between professional caregivers and relatives is low.

Advance care planning and physician orders in nursing home residents with dementia: a nationwide retrospective study among professional caregivers and relatives. Vandervoort A, Houttekier D, Van den Block L, van der Steen JT, Vander Stichele R, Deliens L. J Pain Symptom Manage. 2014 Feb;47(2):245–56.

Health care professionals’ perspectives of advance care planning for people with dementia living in long-term care settings: A narrative review of the literature. Beck E-R, McIlfatrick S, Hasson F, Leavey G. Dementia (London). 2015

Sep 16;

Following review of the studies four themes were identified for discussion; Early integration and planning for palliative care in dementia; HCPs ethical and moral concerns regarding ACP; Communication challenges when interacting with the person with dementia and their families and HCPs need for education and training.

Despite evidence, that HCPs recognise the potential benefits of ACP, they struggle with its implementation in this setting. Greater understanding of dementia and the concept of ACP is required to improve consistency in practice. Synthesising the existing evidence will allow for further understanding of the key issues, potentially resulting in improved implementation in practice.

Background. Nursing home (NH) residents often experience burdensome and unnecessary care transitions, especially towards the end of life. This paper explores provider perspectives on the role that families play in the decision to transfer NH residents to the emergency department (ED). Methods. Multiple stakeholder focus groups (n = 35 participants) were conducted with NH nurses, NH physicians, nurse practitioners, physician assistants, NH administrators, ED nurses, ED physicians, and a hospitalist. Stakeholders described experiences and challenges with NH resident transfers to the ED. Focus group interviews were recorded and transcribed verbatim. Transcripts and field notes were analyzed using a Grounded Theory approach.

Findings. Providers perceive that families often play a significant role in ED transfer decisions as they frequently react to a resident change of condition as a crisis. This sense of crisis is driven by 4 main influences: insecurities with NH care; families being unprepared for end of life;

absent/inadequate advance care planning; and lack of communication and agreement within families

regarding goals of care.

Conclusions. Suboptimal communication and lack of access to appropriate and timely palliative care support and expertise in the NH setting may contribute to frequent ED transfers.

Provider Perspectives on the Influence of Family on Nursing Home Resident Transfers to the Emergency Department: Crises at the End of Life Stephens C, Halifax E, Bui N, Lee SJ, Harrington C, Shim J, et al.. Curr Gerontol Geriatr Res. 2015;2015:893062.

Few patients and relatives had participated in conversations about end-of-life care. Most relatives

wanted such conversations, while the patients’ opinions varied. With some exceptions, patients and

relatives wanted to be informed about the patient’s health condition. The majority wanted to be

involved in the decision-making process, but leave the final decisions to

the health professionals. Among the patients, the opinion varied; some patients wanted to leave the

decisions more or less completely to the nursing home staff.

Conversations about end-of-life care issues are emotionally challenging, and very few patients had discussed

these questions with their family. The relatives’ opinions of the patient’s preferences were mainly based on assumptions;

they had seldom talked about this explicitly. Both patients and relatives wanted the staff to raise these

questions.

Conclusion

Nursing home staff should initiate conversations about preferences for end-of-life care, assisting

patients and relatives in talking about these issues, while at the same time being sensitive to the diversity in opinions and

the timing for such conversations. As the popularity of advance care planning increases in many Western countries,

discussions of patients’ and relatives’ perspectives will be of great interest to a broader audience

End-of-life care communications and shared decision-making in Norwegian nursing homes - experiences and perspectives of patients and relatives. Gjerberg E, Lillemoen L, Førde R, Pedersen R. BMC Geriatrics . 2015 Dec 15(1). : http://www.biomedcentral.com/1471-2318/15/103

Care at the end of life for people with dementia living in a care home: a qualitative study of staff experience and attitudes Livingston G, Pitfield C, Morris J, Manela M, Lewis-Holmes E, Jacobs H.. Int J Geriatr Psychiatry.

2012 Jun;27(6):643–50.

OBJECTIVE: The aim of this study is to examine barriers and facilitators to care home staff delivering improved end-of-life care for people with dementia. METHOD: Individual qualitative interviews of 58 staff in a 120-bed nursing home where the staff and the residents' religion differed were carried out. Interviews continued until a maximum variation sample was achieved and theoretical saturation was reached. RESULTS: The staff felt warmly towards the residents and felt they could recognise when they were near death. Care staff, nurses and doctors did not see themselves as a team and communicated poorly with relatives about approaching death. The staff used opaque euphemisms and worried about being blamed. They were often unaware of or had concerns about the validity of advance care plans. They knew of the religious rituals around death but frequently misunderstood religious tradition.

CONCLUSION: The staff require education and support about discussing and implementing plans around care at the end of life in dementia and about cultural issues around death to improve practice. This would enable the staff to implement advance care plans, knowing that they will be supported. Education

would encompass communicating the complicated, unpredictable path of dementia near the time of death explicitly but sensitively, including recognising that people often do not hear difficult messages and are unable to take on large quantities of information at once. The staff need to know about the resident's religious and cultural ideas as well as ritual practice.

BUT…

An understanding of patients' care goals in the context of a serious illness is an essential element of high-quality care, allowing clinicians to

align the care provided with what is most important to the patient.

Early discussions about goals of care are associated with better quality of life, reduced use of

nonbeneficial medical care near death, enhanced goal-consistent care, positive family outcomes, and

reduced costs. Existing evidence does not support the commonly held belief that communication about end-of-life issues increases patient distress.

However, conversations about care goals are often conducted by physicians who do not know the patient, do not routinely address patients' nonmedical goals, and often fail to provide patients with sufficient information about prognosis to allow

appropriate decisions; in addition, they tend to occur so late in the patient's illness that their impact on care processes is reduced.

Best practices in discussing goals of care include the following: sharing prognostic information, eliciting decision-making preferences,

understanding fears and goals, exploring views on trade-offs and impaired function, and wishes for family involvement.

Several interventions hold promise in systematizing conversations with patients about serious illness care goals: better education of

physicians; systems to identify and trigger early discussions for appropriate patients; patient and family education; structured formats to guide

discussions; dedicated, structured sections in the electronic health record for recording information; and continuous measurement.

We conclude that communication about serious illness care goals is an intervention that

should be systematically integrated into our clinical care structures and processes.

Communication about serious illness care goals: a review and synthesis of best practices . Bernacki RE, Block SD, American College of Physicians High Value Care Task Force.. JAMA Intern Med. diciembre de 2014;174(12):1994-2003. http://archinte.jamanetwork.com/article.aspx?articleid=1916912

Advance care planning for cancer patients: a systematic review of perceptions and experiences of patients, families, and healthcare providers . Johnson S, Butow P,

Kerridge I, Tattersall M.. Psychooncology. 2015 Sep 20;

Synthesis of the literature, which aims to illuminate the salient characteristics of ACP and investigates the psychological

and social features of preparation for the EOL, is required.

METHODS: We searched Medline, EMBASE, PsychINFO, CINAHL, and the Cochrane Central Register of Controlled Trials for

studies on perceptions or experiences regarding ACP of adults with cancer, family, friends, or professionals

caring for this group. Databases were searched from earliest records to 19 November 2014. A thematic analysis of the

literature generated conceptual themes.

RESULTS: Of the 2483 studies identified, 40 were eligible for inclusion. Studies addressed the relational nature of

ACP, fear surrounding ACP, the conceptual complexity of autonomy, and the influence of institutional

culture and previous healthcare experiences on ACP.

CONCLUSIONS: The complex social and emotional environments within which EOL planning is initiated

and actioned are not sufficiently embedded within standardized ACP.

The notion that ACP is concerned principally with the 'right' to self-determination through control over

treatment choices at the EOL may misrepresent the way that ACP actually occurs in cancer care and

ultimately conflict with the deeper concerns and needs of patients, who experience ACP as relational,

emotional, and social.

The effects of advance care planning on end-of-life care: A systematic review Brinkman-Stoppelenburg A, Rietjens JA, Heide A van der.. Palliat Med. 2014 Sep 1;28(8):1000–25.

Advance care planning could potentially improve end-of-life care, but the methods/tools used are varied and of uncertain benefit.

Outcome measures used in existing studies are highly variable. Results: The search yielded 3571 papers, of which 113 were relevant for this review. For each study, the level of evidence was graded. Most studies

were observational (95%), originated from the United States (81%) and were performed in hospitals (49%) or nursing homes (32%).

Do-not-resuscitate orders (39%) and written advance directives (34%) were most often studied.

Advance care planning was often found to decrease life-sustaining treatment, increase use of hospice

and palliative care and prevent hospitalisation. Complex advance care planning interventions seem to

increase compliance with patients’ end-of-life wishes.

Conclusion: There is evidence that advance care planning positively impacts the quality of end-of-life care. Complex advance care planning interventions may be more effective in meeting patients’ preferences than written documents alone.

Patient Care Planning Discussions for Patients at the End of Life: An Evidence-Based Analysis. Ont Health Technol Assess Ser Baidoobonso S.. 1 de diciembre de 2014;14(19):1-72.

A systematic literature search was conducted in MEDLINE, Embase, CINAHL, and EBM Reviews to identify relevant literature published between January 1, 2004, and October 9, 2013.

Results: While the effects of PCPDs on QoL are unclear, single-provider PCPDs were associated with family members being very satisfied with EoL care (odds ratio [OR]: 5.17 [95% CI: 1.52, 17.58]), improved

concordance between patients’ and families’ wishes (OR: 4.32, P < 0.001), fewer episodes of hospital care (mean difference [MD]: −0.21, P = 0.04), spending fewer days in hospital (MD: −1.8, P = 0.03), and receiving hospice care (OR: 5.17 [95% CI: 2.03, 13.17]).

Team-based PCPDs were associated with greater patient satisfaction (standardized mean difference [SMD]: 0.39 [95% CI: 0.17, 0.60]) and fewer outpatient visits (MD: −5.20 [95% CI: −9.70, −0.70]).

Overall, PCPDs were associated with more ACP and more optimal health care use. Limitations : Most of the RCTs were unblinded, intervention was measured or described inadequately in some studies, and the term “usual care” was often undefined.

Conclusions: Patients at the EoL and their families benefited from PCPDs. Furthermore, PCPDs occurring earlier in the course of illness were associated with better outcomes than those occurring later.

Las instrucciones previas en funcionamiento: una herramienta legal con valor psicoterapéutico. Díaz L, López-fando T, Barbero J, Coca C, del Rincón C. Psicooncología. 2008;5(1):117–27.

• Sitúa al paciente, holísticamente, como centro del proceso asistencial, poniendo de relevancia factores biográficos que acompañan a todo proceso biológico

• Visibiliza la actitud de respeto de los profesionales al mundo de valores del paciente, potenciando y generando una relación de mayor confianza y complicidad.

RESUMEN:

El POR QUÉ es necesario favorecer y mejorar el abordaje de las voluntades anticipadas es un problema

conocido hace años, el estudio SUPPORT es un buen ejemplo.

El PARA QUÉ muestra que hay razones prácticas para esto, no sólo el respeto a la autonomía del

paciente (eso se da por descontado)

El CÓMO nos dice que es necesario un proceso, una relación, no basta con una intervención puntual.

El profesional que se empeña en el CÓMO, consigue los mejores PARA QUÉ, y descubre el POR QUÉ de su vocación profesional.

TOMAS FALSAS (lo que leí pero no tuvo lugar y que se va a perder y es una lástima ¿no os parece? )

NOTA: el diseño ya es más libre….;-)

Advance care planning and palliative medicine in advanced dementia: a literature review. Jethwa KD, Onalaja O. BJPsych Bull. 2015 Apr;39(2):74–8. http://pb.rcpsych.org/content/39/2/74.full

Aims and method To assess the factors that affect the clinical use of advanced care planning and palliative

care interventions in patients with dementia. A literature search of Medline, Embase and PsycINFO was

performed to identify themes in advanced care planning and palliative care in dementia.

Results In total, 64 articles were found, including 12 reviews, and three key areas emerged: barriers to

advanced care planning, raising awareness and fostering communication between professionals and

patients, and disease-specific interventions.

J Soc Work End Life Palliat Care. 2015 Apr-Jun;11(2):178-201. doi: 10.1080/15524256.2015.1074141. Social Work Practice with LGBT Elders at End of Life: Developing Practice Evaluation and Clinical Skills Through a Cultural Perspective. Arthur DP1,2. http://www.ncbi.nlm.nih.gov/pubmed/26380926

How physicians approach advance care planning in patients with mild to

moderate Alzheimer’s disease. Cavalieri TA, Latif W, Ciesielski J, Ciervo CA, Forman LJ.. J Am Osteopath Assoc. 2002 Oct;102(10):541–4.

Decision-making ability regarding end-of-life issues is often compromised by dementia in patients with Alzheimer's disease. This study assessed physicians' discussions of advance care planning with patients with mild to moderate Alzheimer's disease. Data were collected by a survey of full-time faculty in the departments of Medicine and Family Medicine and the Center for Aging at the University of Medicine and Dentistry of New Jersey-School of Osteopathic Medicine, as well as physicians in private practice affiliated with the Kennedy Health System. Data consisted of questions that assessed whether advance care planning was provided, what specific topics were discussed, and what actions were taken if advance care planning was not offered. Of the 271 physicians to whom the survey was sent, 63 responded, for a return rate of 23%. Of those responding, 81% indicated that they counseled their patients regarding advance care planning issues, while 19% did not. Of those who provided advance care planning for their patients (N = 51), 88% discussed living wills; 53%, the durable power of attorney for healthcare; 47%, end-of-life care; and 35%, financial planning issues. Thirty-seven percent recommended an elder law attorney, and 31% made a referral to the Alzheimer's Association. Of those who provide dadvance care planning for their patients' caregivers (N = 51), 86% discussed living wills; 78%, nursing home care; 69%, driving issues; and 47%,

end-of-life care. Twenty-five percent referred their patients to an elder law attorney. Results indicate that physicians need to be more knowledgeable and proactive in their approaches to advance care planning for patients with mild to moderate Alzheimer's disease.

A qualitative study: professionals’ experiences of advance care planning in dementia and

palliative care, “a good idea in theory BUT ...” Robinson L, Dickinson C, Bamford C, Clark A, Hughes J, Exley C. Palliat Med. 2013 May;27(5):401–8.

Fourteen focus groups and 18 interviews were held with 95 participants. While professionals agreed that advance

care planning was a good idea in theory, implementation in practice presented them with significant challenges.

The majority expressed uncertainty over the general value of advance care planning, whether current service

provision could meet patient wishes, their individual roles and responsibilities and which aspects of advance care

planning were legally binding; the array of different advance care planning forms and documentation available added

to the confusion. In dementia care, the timing of when to initiate advance care planning discussions was an added

challenge.

CONCLUSIONS: This study has identified the professional, organisational and legal factors that influence

advance care planning implementation; professional training should target these specific areas. There is

an urgent need for standardisation of advance care planning documentation. Greater clarity is

also required on the roles and responsibilities of different professional groups. More complex aspects of advance care

planning may be better carried out by those with specialist skills and experience than by generalists caring for a wide

range of patient groups with different disease trajectories.

Decision control preferences (DCPs) may profoundly affect advance care planning (ACP) and communication. Mean age was 71±10 years, 53% were non-white, 47% completed an advance directive, and 70% made goals of care decisions. Of the sample, 18% had low DCPs, 33% medium, and 49% high. Older age was the only characteristic associated with DCPs (low: 75 years ±11, medium: 69±10, high: 70±9, P=0.003). DCPs were not associated with ACP, in-the-moment decisions, or communication satisfaction. Readiness was the only question-asking behavior associated (low: 3.8±1.2, medium: 4.1±1.2, high: 4.3±1.2, P=0.05). CONCLUSION:

Nearly one-fifth of diverse, older adults want doctors to make their medical decisions. Older age and lower readiness to ask questions were the only demographic variables significantly associated with low DCPs. Yet, older adults with low DCPs still engaged in ACP, asked questions, and reported communication satisfaction. Clinicians can encourage ACP and questions for all patients, but should assess DCPs to provide the desired amount of decision support.

“Doctor, Make My Decisions”: Decision Control Preferences, Advance Care Planning, and Satisfaction with Communication Among Diverse Older Adults. Chiu C, Feuz MA, McMahan RD, Miao Y, Sudore RL. J Pain Symptom Manage. 2015 Sep 2;

Despite evidence that Goals of Care (GOC) discussions should occur early in the disease trajectory, the majority

occur close to end of life. In a pilot, oncologists routinely initiated GOC discussions with all patients in their

everyday ambulatory practice. Following the pilot, 9 of 12 eligible oncologists participated in semi-structured

interviews about their experiences. Analysis resulted in the identification of seven principles of good GOC

discussions embedded in the oncologists' interviews, four barriers to engaging in GOC discussions and

foundational education needs. Participants believed that the appropriate trigger for a GOC discussion is a

diagnosis of advanced cancer, not simply a diagnosis of cancer, and supported the importance of selective and

strategic targeting of GOC discussions.

The findings have informed the development of an education-based model for culture change

within a province-wide cancer care system

Oncologist Experience Implementing Goals of Care Discussions in Everyday Ambulatory Oncology Practice: Implications for Education Robinson CA, Fyles G, McKenzie M. J Cancer Educ. 2015 Sep

19;

Interventions to encourage discussion of end-of-life preferences between members of the general population and the people closest to them - a systematic literature review. Abba K, Byrne P, Horton S, Lloyd-Williams M. BMC Palliative Care. 2013;12(1):40. http://www.biomedcentral.com/1472-684X/12/40

Conclusions Available evidence highlights the importance of actively engaging people rather than passively providing information, and of ensuring an appropriate context for interventions. However, data are limited and there is a need for more research and for sharing of best practice.

Public lectures by physicians intending to promoting home

death as a possibility were unsuccessful in changing

attitudes at six months follow-up. A module on end of life planning delivered as part of ‘expert patient’ education programme on the management of chronic illness was not well received by participants

Morir con dignidad: Estudio sobre voluntades anticipadas. Nebot C, Ortega B, Mira JJ, Ortiz L. Gaceta Sanitaria. 2010 Dec;24(6):437–45.

Objetivo: Describir el perfil de quienes han ejercido su derecho a expresar voluntades anticipadas, analizar la actitud y el

conocimiento de los médicos ante ellas, y comparar las normas que regulan este derecho entre comunidades autónomas.

Método: Estudio descriptivo que incluye análisis mediante muestreo sistemático de 931 registros de voluntades anticipadas en la

Comunidad Valenciana, encuesta en papel estructurada y autoadministrada a una muestra de 84 médicos de servicios de

urgencias y unidades de cuidados intensivos (tasa respuesta del 45%), y comparación de la legislación autonómica que regula

las voluntades anticipadas.

Resultados: Un 1,6 mayores de 16 años han inscrito voluntades anticipadas (relación mujer/hombre de 1,8/1), la mayoría (73,8%)

utilizando un documento previamente redactado por una determinada confesión religiosa. Limitar el esfuerzo terapéutico (99%)

y obtener fármacos para aliviar el dolor (98%) son las razones habituales para inscribir voluntades anticipadas. Pese a que 61

(72,6%) facultativos atendían con frecuencia a pacientes en situación terminal, sólo el 6% consultaron el registro de voluntades

anticipadas en estos casos. El 28% no supo cómo consultar este registro. Hay una amplia variabilidad entre comunidades

respecto a la edad para otorgar voluntades anticipadas, cómo actuar en caso de embarazo de la solicitante, ante quién otorgar

voluntades anticipadas y el número de puntos en que es posible dejar constancia de estas voluntades

Conclusiones: La mayoría de los otorgantes de voluntades anticipadas profesan una determinada confesión y rechazan que se les

practiquen determinados tratamientos. La mayoría de los profesionales no comprueba si los enfermos en

situación crítica han otorgado voluntades anticipadas. La diversidad de criterios entre comunidades

complica el ejercicio del derecho a expresar estas voluntades.

Advance care planning for adults with CKD: a systematic integrative review. Luckett T, Sellars M, Tieman J, Pollock CA, Silvester W, Butow PN, et al. Am J Kidney Dis. 2014 May;63(5):761–70.

Research on ACP in patients with CKD is limited, especially intervention studies. Interventions in CKD should attend to barriers and facilitators at the levels of patient, caregiver, health professional, and system. Intervention studies should measure impact on compliance with patient wishes for end-of-life care.

Associations between end-of-life discussion characteristics and care received near death: a prospective cohort study Mack JW, Cronin A, Keating NL, Taback N, Huskamp HA, Malin JL, et al.. J Clin Oncol. 2012 Dec 10;30(35):4387–95.

Early EOL discussions are prospectively associated with less aggressive care and

greater use of hospice at EOL.

Conocimiento de las preferencias de los pacientes terminales en los hospitales públicos de la Región de Murcia. Tovar BF, Gama ZADS, Hernández PJS. Revista de calidad asistencial. 2011;26(3):152–60.

…Nuestro objetivo es valorar el cumplimiento de esta recomendación y qué factores sociolaborales se asocian a él en los hospitales públicos de la Región de Murcia. Métodos Estudio transversal en 8 hospitales. Medimos indicadores de estructura (existencia y características de los protocolos sobre instrucciones previas) y proceso (frecuencia con que se indagan las preferencias de pacientes terminales), construidos según la recomendación del NQF. El indicador de proceso se mide mediante un cuestionario distribuido a una muestra representativa de profesionales (n=3.141). Realizamos un análisis descriptivo de resultados de ambos indicadores. La asociación de variables sociolaborales con la indagación de preferencias del paciente (variable dependiente) se analiza mediante regresión logística.

Resultados Uno de los 8 hospitales tenía protocolo válido. El 12% (IC del 95%, 9,4-14,6) de los profesionales (n=607)

respondió que en su servicio siempre se indagan las preferencias de los pacientes terminales. La existencia de protocolo se asoció significativamente (odds ratio [OR] = 18,1; IC del 95%, 2,28-143,83) a la respuesta positiva, y trabajar en servicios quirúrgicos (OR=0,15; IC del 95%, 0,04-0,65) a una respuesta negativa. Conclusiones Se observa un escaso cumplimiento de la recomendación del NQF, evidenciado por una escasa protocolización sobre

instrucciones previas y la baja frecuencia de consulta a pacientes terminales sobre sus preferencias. La implantación de protocolos puede ayudar a mejorar esta situación que es significativamente peor en servicios quirúrgicos

ENLACES INTERRUPTUS…

1. http://www.nytimes.com/2015/07/09/health/medicare-proposes-paying-doctors-for-end-of-life-counseling.html?_r=0

2. http://www.pallimed.org/2014/12/medicare-cms-reimbursement-for-advance.html 3. http://khn.org/news/medicare-says-doctors-should-get-paid-to-discuss-end-of-life-issues/ 4. http://www.hhs.gov/news/press/2015pres/07/20150720a.html 5. http://healthaffairs.org/blog/2015/08/06/expanding-access-to-palliative-care-services-the-tide-is-turning/ 6. http://www.medscape.com/viewarticle/849079?src=sttwit#vp_1 7. http://www.caresearch.com.au/caresearch/FindingEvidence/CareSearchReviewCollection/ReviewCollection

AdvanceCarePlanning/tabid/703/Default.aspx 8. http://www.caresearch.com.au/caresearch/FindingEvidence/CareSearchReviewCollection/ReviewCollection

AdvanceDirectives/tabid/704/Default.aspx 9. http://gestionclinicavarela.blogspot.com.es/2015/08/decision-clinica-compartida-el-reto.html 10. http://www.acpdecisions.org/ 11. http://www.geripal.org/2015/08/choice-and-control-at-end-of-life-3.html 12. http://annals.org/article.aspx?articleID=2395727 13. http://spcare.bmj.com/content/5/3/216.full 14. http://gestionclinicavarela.blogspot.com.es/2015/04/cada-momento-importa-para-una-vida.html 15. http://www.atsjournals.org/doi/abs/10.1513/AnnalsATS.201504-253OC#.VeB4g_ntlPY