Investigación Científica y Tecnológica

Henry Cortés Pradilla*, Olga Lucía Correa Ospina**, Alberto Alonso-Babarro***

* MD, MSc. Médico anestesiólogo, FEA-Anestesiología Hospital Can Misses-Ibiza, especialista en Algología y máster en Medicina Paliativa. Ibiza, España. Correspondencia: Anestesiología-Hospital Can Misses c/coronas s/n, 07800 Ibiza-España. Correo electrónico: hpradilla1@gmail.com.
** MD. Médica adjunta del servicio de Urgencias, del Hospital Can Misses. Ibiza, España.
*** MD, PhD, Médico adjunto de la Unidad de Cuidados Paliativos Hospital Universitario La Paz, Madrid, España.

Recibido: agosto 24 de 2010. Enviado para modificaciones: septiembre 1 de 2010. Aceptado: febrero 24 de 2011.

Objective. To describe the preference for place of death among elderly people who consulted or were patients of some departments at a general hospital in the Baleares Islands (Spain) and potential relationship to other factors.

Methods. Descriptive cross-sectional trial developed at a health care clinic in Ibiza and Forment-era, from February through August 2009. Participants: 105 ≥ 65 years of age.

Results. The mean age was 75 ± 7 years old, 58 males (55.2 %). 67.6 % (95 % CI: 58.6-76.6) of the people surveyed said that their preferred death place was home; 6.7 % (95 % CI: 1.9-11.5) expressed their preference for acute care hospitals and 25.7 % (95 % C.I.: 17.3-34.1) preferred a hospital palliative care unit. Everyone chose quality palliative care versus euthanasia in the end-of-life stages.

Conclusions. Since home was the preferred death place for most of the elderly, this option seems to be basically influenced by family ties and a sense of belonging, the presence of some kind of substance addiction or a largely disabling disease. With regards to the latter, an in-hospital palliative care unit was preferred.

Dame Cicely Saunders founded the St. Christopher's Hospice in London in 1967, giving birth to the development of palliative care (1), medical breakthroughs and longer life expectancy for patients suffering from serious conditions. This has generated interest in assessing how health care services may better used in the range of end-of-life events (2) and the process leading to death. In some cases, the process itself becomes more feared than death itself. (3).

Of the total population of elderly in Spain, the Baleares Islands (the geographical region where Ibiza is located) has 13.84 % of the people over 65 years of age and approximately 20 % of them live alone while around 3 % live in nursing homes (4).

Studies in the United States show that between 23 % to 66 % of the people over 65 die in acute care hospitals and dying in a hospital is closely related to the characteristics of the local health care system rather than to any clinical or demographic variables or even to the preferences of the diseased. Clinical factors may also influence the preferences of both patients and families with regards to their end-of-life decisions (5).

The psychological issues that these patients are confronted with in their last days and years of life, bio-psycho-social development, ethnicity, religious believes and many other factors determine how people face death and their preferences for a place to die (6).

End-of-live care requires health services and ethical and knowledgeable professionals who make decisions in accordance with the preferences of the patient and with every end-of-life aspect (6). This is why often there are ethical concerns within the realm of palliative care (7).

As a general rule, any able adult may decide whether to accept or reject a particular medical treatment, in the same way as he/she may reject or accept a preferred death place. Occasionally, it is possible to establish certain factors that interfere with the patient's ability, such as the use of alcohol, drugs or metabolic toxins. It is extremely important to make an attempt to correct any transient negative influences on the patient's ability so as to respect self-determination (8).

The preferences of the elderly with regards to end-of-life care are particularly important because most deaths occur between 65 and 89 years of age (9). Otherwise, medical home-care is a solution currently adopted by many elders (10). Hence, the general preferences of these patients are changing and some turn their homes into a place where they feel at ease among their beloved (11) and the possibility to enjoy a "normal life" is a valid reason for over half of the people with a progressive disease who want to die at home (12). An example of the studies about such preferences is the review of terminally ill patients with cancer by Gomes and Hugginson (13).

Determining the place of death preferences is also key to the establishment of heath care policies, not just to provide our patients with a "peaceful death" experience, but also to understand why people die where they die (14,15).

Most of these studies have been accomplished in patients with cancer and a few of them have examined the factors related to the place of death in other populations (11-15).

All of these factors were considered within the socio-demographic framework of the population living in the Pitiusas Islands (Ibiza and Formentera), located to the East of the Iberian Peninsula in the Mediterranean, since their excellent climate as compared to the rest of Europe makes them an attractive shelter to people from different cultural and ethnic backgrounds, considering the typical and increasing diversity of our globalized world.

Health care services in Ibiza and Formentera are provided through five health care centers and two referral hospitals of the Can Misses Hospital (H. C. M.), located in Ibiza the capital city. They serve a population of 135.432 people, of which 14.566 is over 64 years old, including both men and women. 80 % of them are taken care of at this hospital (16).

The main objective of the study was to assess the elders who consulted or were patients at the H. C. M using semi-structured interviews to determine their preference with regards to place of death. The study included primary care, internal medicine, home care, palliative care, ER, oncology, ICU, and nephrology. The secondary objective was to analyze the influence of various factors that could be related or potentially related to a place-of-death preference.

METHODOLOGY

Descriptive cross-sectional study at the Can Misses Hospital of Ibiza (H. C. M.), which belongs to the health care system of Ibiza and For-mentera, from February through August, 2009.

PARTICIPANTS

A group of patients ≥65 years old was considered; these patients came to the following hospital departments: primary care, internal medicine, medical home care, palliative care, ER, oncology, ICU and nephrology; and/or the adjacent primary health care center. The research committee of the educational unit of the H. C. M. approved the study. Measures were taken to ensure the secrecy and confidentiality of the participants.

SAMPLE SIZE

The estimates were that the population needed to treat was 150 patients for ± 8% accuracy with 95% confidence intervals.

Inclusion and Exclusion Criteria

All patients aged 65 or older, living in the area of the study and who came for consultation during the specified period of time to the participating health care departments and who signed the informed consent were included.

The following exclusion criteria were adopted: moderate to severe cognitive impairment according to Pfeiffer's questionnaire (17) - four or more mistakes -; patients who did not speak Spanish or English and with an extremely impaired general condition evaluated in terms of a Palliative Performance Status (PPS) < 60 % (17).

Data collection and procedures

The trial was conducted between May and August 2009; three doctors collected the data, including the main researcher. Random surveys were made to patients who came for consultation and/or had been admitted to the previously mentioned H.C.M. departments, who met the inclusion and exclusion criteria.

A semi-structured anonymous questionnaire was designed, containing all the study variables. The questionnaire was administered at the Hospital premises and was filled directly by the interviewer; the average time for the survey was 30 to 40 minutes. A specific data-base for the study was designed, including range and verification tests and control of inclusion and exclusion criteria.

Study variables

• Key variables. Preferred place of death: at home, at the acute care hospital or the palliative care unit. Direct question about the patient's preference for quality palliative hospital care versus euthanasia, in case of a terminal illness.

• Related variables.

• Contextual variables. Demographic: age, gender, place of birth, and place of residence, marital status. Social and Family environment: level of education, income and household. Health care system Interactions: place where health care is provided. Toxic habits: smoking, alcohol use determined using the CAGE test for Cuttingdown, Annoyed, Guilt, Eyeopen; instrument to diagnose alcohol abuse and problems derived from cutting down on alcohol use, or for the diagnosis of alcohol abuse. Becoming upset as a result of criticism, sense of guilt and morning intake of alcoholic beverages (17).

• Emotional and physical variables. The subjective and objective symptoms were assessed using the EASS scale; the Edmonton symptoms evaluation system (17). Functional ability using the Karnofsky scale (17); level of dependency using Barthel's scale (17).

• Spiritual variables and level of information. Practice of some type of spiritual discipline taking as a reference any type of religion, or absence thereof.

Statistical Analysis

Analyzing the factors relating to the preference for place of death, the x² Test was used to compare the categorical variables, t-test and ANOVA were used to compare the continuous variables. In the absence of a normal distribution for quantitative variables, the Mann Whitney U-test non-parametric equivalent was used.

Descriptive Analysis

150 patients were selected, of which 105 were finally included in the trial (mean age 75 ± 7 years); 58 were males (55.2 %); 54.3 % were married, 3.8 % had a partner, 30.5 % were widows, 10.5 % were separated/divorced and 1.0 % were single.

The patients surveyed belonged to the following areas of care: primary care (19 %), internal medicine (20 %), home care (6.7 %), palliative care (15.2 %), ER (21 %), oncology (8.6 %), ICU (1 %), nephrology (8.6 %).

The country of origin of the patients surveyed was Spain, 81.9 % and Germany, Argentina, England, France, Uruguay, Brazil, Italy, Morocco, Paraguay, Rumania, for the remaining 19.1 %.

With regards to income levels, the people surveyed stated that it was high in 13.3 %: enough, 80.0 %; Insufficient, 3.8 %; and don't know/didn't answer 1.9 %.

In terms of education, 28.6 % were illiterate, 40 % had completed elementary education, Special Education 6.7 %; General Basic Education 5.7 %; High-school 4.8 %, Professional Training 1.9 %; Technical degree 6.7 %; Higher Education 5.7 %. The household characteristics are shown in Table 1.

Preference for Place of Death

Dying at home, 67.6 % (95 % CI: 58.6-76.6) was the preferred place of death by the people surveyed; 6.7 % (95 % CI: 1.9 - 11.5) preferred an acute care hospital and 25.7 % (95 % CI: 17.3 - 34.1) preferred a palliative care unit. Of the people surveyed, 99 % expressed their desire to use palliative care and only 1 (1 %) said he would rather choose euthanasia.

68 % of the people surveyed were smokers and 27 % were alcohol abuse suspects. 68.7 % were religious and of these 63.9 % were Catholics, 3.8 % were Protestants and 1.0 % Muslims.

According to Karnofsky Score, the mean functional ability of the interviewed was 80 and the level of dependency according to Barth-el Scale was 70. The most valued symptoms by patients in the ESAS Scale were: 1. pain, mean 3.75 ± 1.74; 2. Fatigue, mean 2.73 ± 2.10; 3. Appetite, mean 3,20 ± 2,31; 4. Well-being, mean 3.04 ± 2.22; 5. Insomnia, mean 3.54 ± 1.73.

Analysis of related factors

There was no relationship between the preference for the place of death and sex or marital status of the patients surveyed.

Statistically Significant

• Type of household. Of those who lived alone, 71.4 % preferred dying in a hospital palliative care unit and 28.6 %, preferred dying at home. Of those who lived with their families, 75.9 % preferred dying at home; 19.3 %, at a hospital palliative care unit and 4.8% preferred an acute care hospital. Among those living with other relatives, 50.0 % preferred dying at home, 40.0 in a hospital palliative care unit and 10.0 % in an acute care setting. Of those who lived with non-relatives, 40.0 % preferred a hospital palliative care unit; 40.0 %, an acute care setting and 20.0 % preferred dying at home (p < 0.05).

• Residence. 79.5 % of the people born in Ibiza preferred dying at home; 15.1 % in a hospital palliative care unit and 5.5 % in an acute care setting. Of all the Ibiza residents, 50.0 % preferred dying in a hospital palliative care unit; 40.6 % at home and 9.4 % in an acute care hospital (p < 0.05).

• Spirituality. Among those who practiced a religion, 74.6 % preferred dying at home; 22.4 % preferred a hospital palliative care unit and 3.0 % an acute care hospital. For those who didn't report religious practices, 54.1 % preferred dying at home; 32.4 % preferred a hospital palliative care unit and 13.5 % preferred the acute care setting (p < 0.05).

• Modality of Care. Among the primary care patients, 80 % preferred dying at home and 20.0 % preferred a hospital palliative care unit. Among the internal medicine patients, 57.1 % preferred dying at home; 38.1 % preferred a hospital palliative care unit and 4.8 % preferred an acute care setting.

Among the home-care interviewees, 100 % preferred dying at home; of the patients receiving palliative care at home, 50.0 % preferred dying at home and 50.0 % preferred hospital palliative care. With regards to ER patients, 86.4% preferred dying at home; 9.1 %, in a hospital palliative care unit. Of the cancer patients interviewed, 77.8 % preferred dying at home, 22.2 % preferred a hospital palliative care unit. Among the intensive care unit patients, 100 % preferred dying in a hospital palliative care unit. Of the nephrology patients interviewed, 22.2 % preferred dying at home; 55.6 %, in the acute care hospital and 22.2 % preferred a hospital palliative care unit (p < 0.05).

• Cigarette Smoking. 47.1 % of smokers preferred dying at home, as compared to 77.5 % of the non-smokers. Dying in a hospital palliative care unit was preferred by 44.1 % of smokers, against 16.9 % of the non-smokers; 8.8 % of the smokers preferred dying in an acute care setting, versus 5.6 % of the non-smokers (p < 0.05).

• The association between alcoholism and preference for the place of death showed that the non-drinkers preferred dying at home (75.0 °/o) as compared to those in whom there was a suspicion of probable alcohol dependency with 52.0 % and 33.3 %, respectively. Dying in a hospital palliative care unit was preferred by 18.4 % of the non-drinkers and by 44.0 % and 33.3 % of the suspects and probable dependency, respectively. Dying in an acute care setting was preferred by 33.3 % of those with probable dependency; by 6.6 % of the non-dependent drinkers and by 4.0 % of those suspected of alcohol dependency (p < 0.05).

• Level of Education. 80.0 % of the illiter -ates preferred dying at home; 3.3 % preferred an acute care setting and 16.7 % preferred a hospital palliative care unit. Of those who reported special education, 42.9 % preferred dying at home; 28.6 % preferred an acute care setting and 28.6 % preferred a hospital palliative care unit. Of those with elementary education, 72.9 % preferred dying at home; 8.3 % preferred an acute care setting and 18.8 % a hospital palliative care unit. The preferences for those with high-school education were: 71.4 % at home; 28.6 %, in a hospital palliative care unit and 0 % in an acute care hospital setting. University graduates reported as follows: 69.2 % preferred a hospital palliative care unit; 30.8 % preferred dying at home and 0 % an acute care hospital setting (p < 0.05).

• With regards to functionality, those who preferred dying at home had a higher Kar-nofsky score and a higher Barthel Scale rating versus those who preferred dying in a palliative care unit or an acute care setting (p < 0.05).

There were significant differences among the symptoms reported depending on the place of death preference. Overall, the higher the symptomatic "burden" the lower the preference to die at home (tables 2 and 3). Pain and insomnia were not statically significant variables.

Our study indicates that despite the fact that most of the people interviewed (67.6 %) preferred dying at home, whenever there were chronic diseases, abuse of illicit substances and/or any social-family disruptions, the patients preferred a health care center.

None of our interviewees chose euthanasia as a way to end their lives and 100 % expressed their desire to receive palliative care at their end-of-life stage.

The type of household and the preference for the death place was significant and showed that the lonelier and more separated from their families, the people interviewed preferred in-hospital palliative care and acute care settings, as compared to those who live with their families and have stronger social bonds. These results are consistent with previous studies (3,5,12,13,15,18).

With reference to the place of residence, the results showed that those who were born in Ibiza and lived there tended to prefer dying at home, whilst those who lived but were not born in Ibiza preferred a health care institution. This points to the importance of family bonds, social and family relations at the end-of-life stages (14,15,18,19).

According to the review by Gruenewald et al. (8), the Europeans as compared to the American elders when facing near-death situation was a call for action. The awareness of a terminal illness moved them to want to enjoy life as best as possible in the time left; Americans on the other hand have "after life" expectations. However, those who practiced a religion had better acceptance for death and little fear of agony.

The relationship between the care modality and the preference for place of death suggests a different behavior depending on the type of patients. For instance, internal medicine, nephrology and ICU patients, probably afflicted with serious chronic illnesses and multiple hospital admissions, preferred an acute care setting or a hospital palliative care unit.

This led us to believe that the preference expressed by the interviewees depended on the autonomy they enjoyed to be at home. This result was very similar to the findings by Fried et al., who found a non-significant difference between home and hospital (9), but significant in terms of the the patient's response to a particular disease.

With regards to the association of cigarette smoking and/or alcohol abuse and preference for place of death, both variables exhibited a similar behavior. These people prefer dying in an institution, probably because they have experienced more frequent symptoms related to their smoking/alcohol abuse practices. In this regard, Terri R. Fried et al. reports the risk these patients face of choking to death (9,20). In this study, one third of the participants changed their preference depending on the way they recovered from their chronic illnesses.

People with higher levels of education showed a preference for dying in an institution that could provide them with palliative care, probably because they are more knowledgeable about its benefits. Probably the lack of information, in addition to the difficulties experienced by patients, family and doctors to sit down and discuss death, are still the basic reasons for the under-utilization of palliative care, as reported by Fine and Davis's review (21).

When comparing our results against other publications on the same topic, most of them are based on terminal cancer patients (10,13,19), are retrospective studies and / or based on the care-takers perspective about these final days (5,8,9,15,22,23); in contrast, this study was done on a general population of elderly patients consulting various departments of a general referral hospital.

The importance of our work lies on the fact that it an original paper using a multicultural population that is quite typical of the Mediterranean environment. There were however similarities in the results; for instance, home is the preferred place of death for the interviewees, with over 60% preference. But this is not the best "place to die" since that depends very much on the patients health condition and the support provided by the health care system to these patients, in addition to the specific individual characteristics (9,18,20).

Our study suggests that people with greater physical and emotional involvement, lower Kar -nofsky scores, lower Barthel scores, who don't live with their families and/or with symptoms that may imply frequent visits to a health care institution, may prefer a hospital setting rather than home. Numerous serious studies show that notwithstanding the high preference for dying at home, only a few patients finally die at home (18).

The participants in our study that experienced emotional symptoms such as depression and anxiety preferred dying in a health care environment. Our assumption is that these people are more prone to seek and need professional assistance. This stresses the role of the mental health professional when taking care of a terminal patient, as reported in the review by Gibson et al. (3).

The main limiting factor in the study is that it was not a representative sample of the general population. Firstly because the sample exhibited some kind of pathology; secondly, because the study was developed in a very particular geographical region and the results cannot be extrapolated to the Spanish population as a whole. The sample chosen is not a representative sample of the Mediterranean population in general and much less of the Spanish population at large.

Additional studies, with a larger number of participants and longer time frames are needed so as to include as many variables as possible related to the decision about the place of death.

Social and health care services should consider all preferences and be prepared to provide total coverage to the terminally ill patient when assigning resources to the elderly, as statistics show that this is an increasingly growing population.

Aina Yáñez, Ph. D., health care technician, assistant to the Health Care Education Department of Ibiza and Formentera.

1. Kim A, Fall P, Wang D. Palliative care: optimizing quality of life. J Am Osteopath Assoc. 2005;105: S9-14.

2. Rabow MW, Hardie GE, Fair JM, et al. End-of-life care content in 50 textbooks from multiple specialties. JAMA. 2000;283:771-8.

3. Gibson CA, Lichtenthal W, Berg A, et al. Aspectos psicológicos de los cuidados paliativos. Anesthesiology Clin N Am. 2006;24:61-80.

4. Díez-Cascón González P, Sisó Almirall A. Atención urgente al paciente anciano en atención primaria. Rev Esp Geriatr Gerontol. 2009;44(Supl. 2):48-54.

5. Ramón I, Alonso J, Subirais E, et al. El lugar de fallecimiento de las personas ancianas en Cataluña. Rev Clin Esp. 2006;206:549-55.

6. Cohen J, Bilsen J, Fischer S, et al. End-of-life decision-making in Belgium, Denmark, Sweden and Switzerland: does place of death make a difference? J Epidemiol Community Health. 2007;61:1062-8.

7. Demme RA, Singer EA, Greenlaw J, et al. Aspectos éticos en los cuidados paliativos. Anesthesiology Clin N Am. 2006;24:129-44.

8. Gruenewald DA, White EJ. La experiencia de la enfermedad en los ancianos cerca del final de su vida: una revisión sistemática. Anesthesiology Clin N Am. 2006;24:163-80.

9. Fried TR, van Doorn C, OTeary JR, et al. Older persons' preferences for site of terminal care. Ann Intern Med. 1999;131:109-12.

10. Tang ST. Influencing factors of place of death among home care patients with cancer in Taiwan. Cancer Nurs. 2002;25:158-66.

11. Wachterman MW, Sommers BD. The impact of gender and marital status on end-of-life care: evidence from the National Mortality Follow-Back Survey. J Palliat Med. 2006;9:343-52.

12. Vig EK, Davenport NA, Pearlman RA. Good deaths, bad deaths, and preferences for the end of life: a qualitative study of geriatric outpatients. J Am Geriatr Soc. 2002;50:1541-8.

13. Gomes B, Higginson IJ. Factors influencing death at home in terminally ill patients with cancer: systematic review. BMJ. 2006;332:515-21.

14. Lin HC, Lin YJ, Liu TC, et al. Urbanization and place of death for the elderly: a 10-year population-based study. Palliat Med. 2007;21:705-11.

15. Cohen J, Bilsen J, Hooft P, et al. Dying at home or in an institution using death certificates to explore the factors associated with place of death. Health Policy. 2006;78:319-29.

16. Área de Salut d'Eivissa i Formentera, Memoria 2008, Servei de Salut de les Illes Balears, Govern de les Illes Balears, Conselleria de Salut i Consum.

17. Porta J, Gómez Batiste X, Tuca A. Manual: Control de síntomas en pacientes con cáncer avanzado y terminal. 2^a ed. Madrid: Arán Ediciones; 2008. Cap. 16. Apéndice III: Instrumentos de evaluación. pp. 353-62.

18. Temkin-Greener H, Mukamel DB. Predicting place of death in the program of all-inclusive care for elderly (PACE): participant versus program characteristics. J Am Geriatr Soc. 2002;50:125-35.

19. Aabom B, Kragstrup J, Vondeling H, et al. Population-based study of place of death of patients with cancer: implications for GPs. Br J Gen Pract. 2005;55: 684-9.

20. Fried TR, van Doorn C, Tinetti ME, et al. Older persons' preferences for site of treatment in acute illness. J Gen Intern Med. 1998;13:522-7.

21. Fine PG, Davis M. Centros de cuidados paliativos: asistencia integral en la fase terminal. Anesthesiology Clin N Am. 2006;24:181-204.

22. Teno JM, Clarridge BR, Casey V, et al. Family perspectives on end-of-life care at the last place of care. JAMA. 2004;291:88-93.

23. Brazil K, Howell D, Bedard M, et al. Preferences for place of care and place of death among informal caregivers of the terminally ill. Palliat Med. 2005;19: 492-9.

Conflicto de intereses: Ninguno declarado.
Financiación: Recursos propios de los autores.