WHY DO 70% OF PEOPLE DIE IN HOSPITALS WHILE WAITING TO DIE AT HOME IN TURKEY?…
Death is the most basic and most decisive phenomenon that forces human beings to think about existential causes in the face of life. Death is a loss, if we live our grief fully, it becomes a vehicle for growth and renewal.
TSELIOT says “The end of all our research is to reach where we started and get to know it for the first time”. In order to grasp the valuable meanings that our impermanence and finitude add to our lives, we must accept death and understand it.
Thanks to the developing modern technologies, we have started to live in a society that is isolated in addition to increasing life expectancy and cancer cases. The patient and the physician are at a point that can be reached instantly with technology, but they are also so far away. Physicians are faced with the concept of care patients and death more and more due to the increasing and aging world population. Although not all of us today, we may be in the position of the recipient of health care as a patient or patient’s relative one day.
Not respecting people’s final decisions; For example, hiding the truth, being taboo to talk about death puts obstacles on us. The aim of this study is to determine the wishes of the Turkish people, to compare them with the world, to be a pioneer by projection from today to the future.
In our country, there are not many studies on the choice of place of death of healthy people and even terminally ill patients. The primary purpose of this questionnaire is to determine the preferences of the place of death and the expectations of patients and their relatives at the end of life.
METHOD
Data Collection and Statistical Analysis: The survey questions prepared in accordance with the purpose of the research were delivered to internet users on 24 November 2016 via surveymonkey via doctorsite.com, continued for 26 days social media The data obtained as a result of the answers given by the user were analyzed with the help of the SPSS program. 996 people participated in the survey. 736 people answered the questions fully.
RESULTS
In the demographic analysis, 34.0% of people are in the age group of 30-39, 32.6% of people are between the ages of 20-29. 59.6% are university graduates, 56.8% are married, and 35.2% are single. 46.2% of them were private sector employees, 22.8% of them were civil servants.
6 people did not mark their education level, 15 people did not explain their marital status, 40 people did not state their employment status.
In the survey, 93.3% of the people answered the question of definition of health by the World Health Organization (WHO) marked the option “It is a state of being physically, spiritually and socially”, which is in line with its new definition.
To the question “How would you define a quality life?”, 37.0% answered the question of health, peace and money
, 23.4% the state of feeling good in the socio-cultural environment in which I live, % 23.4 answered that it is the state of being able to make my goals and expectations healthy.
You suddenly learned that you or a loved one has cancer. 66.6% of the people answered the question “How do you feel in the first process”? To help myself and my loved ones, I start researching the best professional health care.
Your relative/loved person has been diagnosed with a disease in need of care, where would you like to take care of him in his last period? 67.8% people answered the question; I would like them to be together with their loved ones, accompanied by professional help at home. In an emergency, I want the medical team to create the conditions. “I’m afraid I won’t be able to help him in an emergency.” 0.8% of people chose to be placed in a state-guaranteed nursing home.
41.0% respondents to the question “Choose the closest one to you when you think about the end of life or death; I am most afraid of dying in my last period in pain and uncontrollable suffering, 28% of people; “I want to make sure that the most suitable material, medical equipment and medicines are used correctly,” he said.
Do you think death is taboo in Turkish society, is it talked about? 37.2% of the people answer the question very often. 33.8% people talk sometimes 6.4% people never talk about death It is taboo. she replied.
You are in the last phase of a fatal illness. When asked to rank the following options in order of importance, the first choice of people is 67.42% of people do not want to suffer unbearable pain and 66.78% of people. He wants to get all kinds of information about his disease from his doctor. 59.40% of people do not want to be a burden to others. 56.76% do not want their physical and emotional abilities to be lost while they die.
When asked where would you prefer to die, 69.4% would prefer to live in a private room 12% would prefer a private room in the hospital, 10.1% would prefer to die in a full-fledged intensive care unit in the hospital 6.5% only in a palliative center 1.1 people chose to die in a nursing home. 
Palliative care ” It is a support service to care patients such as cancer, stroke, Alzheimer’s, dementia and their relatives. It focuses on relieving the patient’s suffering and relieving him. By avoiding unnecessary painful medical interventions (without shortening the life span / leading to death), it allows the patient to spend his last period in a calm, comfortable and quality environment with psychological, spiritual and social integrity. Would you like to receive this care for your relatives? To the question “I would like”, 89.53% of the people answered the question “Where would you prefer this care to be given,” 57.96% preferred it to be given at home
While 45.07% of people thought that cancer patients were not adequately treated in their last stages, only 9.39% of people thought that they were adequately treated.
While the rate of those who consider painkillers such as morphine to be addictive and who do not want to use or make use of them, remained at 7.19%, while the rate of those who thought that these drugs should be used and prescribed was 24.94%.
In their end-of-life preferences, 83.23% stated that they wanted to die in dignity, painless, with their pain relieved, in a calm and peaceful way, with their family and loved ones around them. 67.1% preferred to die at home, 13.9% preferred to die in a palliative center, 10.6% preferred to die in a private room in a hospital, only 7.7% in intensive care unit, and only 0.7% preferred to die in a nursing home.
DISCUSSION AND COMMENT
Surveys and scientific studies point to many factors in people’s choice of place of death. These are mainly:
Sociodemographic factors The patient’s social environment and living arrangement (age, gender) , marital status and socio-economic status )
Etiological factors (underlying cause of death)
Ecological factors Rural / urban lives / hospital density, having informal caregiver support, caregiver health status and emotional capacity, as well as the caregiver’s capacity and willingness to care for the patient.
Additionally;
The need for symptom management and control, the need to access the appropriate specialist at the right time.
The fear of losing the dignity of the patient,
Finding and using the right medical equipment at home, the availability and accessibility of palliative care services,
The experience of the patient and his relatives about hospitals.
It is the perspective that includes the religious belief of the patient and the patient’s relative about death and dying.
According to the 2013 report of L’observatoire national, most people die in hospital, although 8 out of 10 people in France prefer to die at home. 1 in 2 deaths occur in hospital. and the determining factors are as follows;
Married men die in hospital.
The very young and the very old die at home if they are single or divorced.
Women mostly prefer nursing homes and live longer.
Most of those who die at home are elderly and over 90 years old.
Most of the urban dwellers across Europe die in hospitals.
The majority of patients who die of cancer especially die in hospitals in France and Switzerland compared to other countries.
Deaths from cerebrovascular disease occur in hospitals in France and England, with the highest number of deaths in Europe.
When the factors affecting the choice of place of death in the last two decades were examined, it was found that they did not change.
Especially in urban life, cancer patients, deaths from cerebrovascular disease (cerebrovascular diseases), respiratory diseases such as chronic obstructive pulmonary disease (COPD) and neurological patients such as multiple sclerosis, amyotrophic lateral sclerosis (ALS) die in the hospital. Hospital deaths are less common in rural areas. 30% of cancer deaths in the Netherlands and 70% in France occur in hospitals. Although most of the patients and their relatives prefer to die at home or not, despite the developments in all palliative care home nursing services, hospital deaths have remained stable and the number of deaths at home has not increased in the last 20 years. Only 1 in 3 deaths occur at home. We usually lose people with circulatory system disorders, Parkinson’s or mental problems at home, following the insertion of a cardiac pacemaker or stent. 60% of French people die in hospital. 30% of them spend the last 30 days of their lives in the hospital, 60% of them come to the hospital the day before they die. In other words, one out of three people spends their last month in the hospital, not at home. While the number of people who died in nursing homes was 8% in 1990, it was 11.5% in 2010.
According to the results of this study we conducted in Turkey, we bid farewell to 67% patients in hospitals, even though 67.1% of people, that is, about 7 out of 10 people, want to die at home. (The data were obtained verbally from the death information system due to the patient privacy law. Since we did not detail the deaths in the hospital as intensive care or service, the data of the people who died in the intensive care unit are missing).
What are the reasons for this stability? What are the causes of the brake on deaths at home?
The biggest deficiency in France is the problem of getting help from assistants. Due to this deficiency, the relatives of the patients have to transfer their patients to the hospital even if they do not want to. The biggest problem is that they cannot provide continuity in patient care due to the weekend and night care problem. For this reason, people unfortunately die in hospitals, even if they want to die at home. In Turkish society, while there used to be more care at home, the 75-year-old child who had to take care of his 95-year-old mother due to the increased life expectancy and the additional illness increases the number of deaths in hospitals and intensive care units.
Also, the number of hospital admissions increases as we approach the end of life. We can also count the increase in serving according to the needs of the person, the ease of hospital services for those who live alone, the increase in the beds allocated especially for cancer patients in hospitals.
Although people prefer to die at home because death at home occurs in a calmer, less inhuman, less intrusive, less technical and natural way;
Deficiencies in maintenance coordination; Due to the complexity of end-of-life care, it cannot be adapted to the reality at the end of life,
Lack of foresight and communication,
Inadequate pain management and lack of information on this subject,
Mobile palliative care , lack of access to home care team or geriatrics team,
Family physicians’ time problem
In addition, patients and their relatives do not want to wait for the doctor, causing patients to spend their last period in the hospital rather than at home.
Our information on cancer patients’ choice of place of death is insufficient. In a study by Higginson et al., which screened 18 studies in England, they found that more than 50% of patients preferred home for end-of-life care and death. The acceptability of death in hospital may increase over time for terminal cancer patients, especially as problems related to the fatigue of relatives arise. In a study conducted on 160 terminally ill cancer patients, 53% preferred home care, 29% preferred hospice, 14% preferred hospital, and 3% preferred home nurse care.
In the USA, 17% of deaths occurred at home in 1994. Most of those who die at home are cancer or AIDS patients. While some studies report that these patients are younger, other studies report that people over the age of 65 mostly die at home. Those who die at home belong to a higher social class and/or have more economic resources. They and their families have fully accepted the fact that they will die soon. They have a caregiver, they do not live alone, their primary caregiver relatives are healthy. The patient’s self-care can be met at home.
In Turkey, S:Aksoy et al. According to the results of a national study conducted on 200 adults, 47% preferred to die with their caregivers at home, while 53% preferred to die in hospitals where they thought they could receive better care.
In the study of R Durusoy et al. on 150 cancer patients, only 63% stated that they wanted to hear all the information about their disease from the doctor clearly and clearly. . In the study of Durusoyun, 91% prefer sudden death at the end of life, and 75% do not want any intervention in the last minutes. While 92% wanted the doctor and their family at the hospital at the end of life, 71% preferred home and family. 30% of people stated that they feel safer in the hospital rather than at home. All patients want a sudden, painless death with religious rituals. In this study, patients living in the city preferred death in the hospital 2.7 times more than in the rural areas. While people with cancer for a long time preferred the hospital as the place of death at a rate of 72%, the reason why this rate was opposite in our study may be that the survey was conducted in healthy individuals. During the illness, the person prefers the doctor and the hospital environment. This preference varies from the home environment to the hospital environment in proportion to the long illness of the person and the bond he establishes with his doctor.
At the end of life, spiritual and religious tendencies increase, and people begin to question. The easiest solution to inner questions comes from faith. At the end of life, the meaning of life begins to be questioned.
CONCLUSION
Palliative care responds to the physical, psychological and social needs of the patient. This framework continues until giving support to the patient’s family at the point of mourning. The aim of palliative care is to increase the quality of life of the patient and his family as much as possible. Patients and family members can sometimes experience various adjustment problems while grappling with the expected death. Adaptation to death; The experiences of patients and families vary depending on whether the death is the result of a long and chronic illness, a disease that ends suddenly, or an unexpected accident.
The needs of the family can change and take different forms during the period from the beginning of the disease to the death. For this reason, family members have to use their energies in a balanced way and not to exhaust themselves so much that they become useless when they are needed most.
Death at Home
Approximately two-thirds of cancer patients stated that they preferred to die at their own home. Terminal cancer patients who die in their homes find physical and emotional comfort here. Home is a place where one feels safe. It also provides a secure and permanent identity. The idea that “home is the best place to die” has been firmly established in the minds of many service providers and practitioners.
In our study, 65.63% of people would like to be together with their loved ones at home with professional help. In an emergency, I want the medical team to create the conditions. They chose the answer I’m afraid of not being able to help him in an emergency. Caregivers are afraid of not being able to provide the right care or not knowing what to do in an emergency. Many studies indicate that the primary condition of home care is the presence of willing and successful caregivers, patients’ relatives want to know how to relieve symptoms and to be sure of continuous and rapid professional support.
Hinton’s (1994) St. In the study that Christopher conducted with patients in the Home Care program in the last eight weeks of their lives, it was found that 17% of the patients showed psychological symptoms. 11% of the patients experienced distress due to some degree of pain, depression, weakness or anxiety. Those who experienced the process of dying at home stated that they experienced significantly more anxiety and depression.
Although family members have to care for dying patients at home, the relationship between patient and family members may not always be desirable or ideal. Families struggling with serious diseases experience various problems as much as patients. More than half of the family members who care for terminal cancer patients experience stress about their role as caregivers, and nearly a quarter see the patient’s suffering as a source of uneasiness for them. They also suffer from uncertainty about the course of the disease, as well as their inability to cope with the patient’s depression and anger.
In another study, few cases were found among those who care for their parents or spouses who noticed the first signs of developing cancer in them. These people felt obliged to devote themselves (time and energy) to the dying person and did not seek medical care for themselves until the death of the person they cared for.
Doyle revealed that patients dying at home have other fears besides those experienced by patients dying in hospital:
• The patient has concerns about the health of his family, who show signs of fatigue and stress every day.
• Fears of being hospitalized again, even though it is better for his family, if not for himself.
• Fears crises at home when there is no medical staff and wonders about symptoms for which it is necessary to call the doctor.
• The patient is more uncomfortable at home when he is sleepless or when he is confused, than when he is in the hospital.
• He feels excluded from the decision-making mechanisms at home and is disturbed by the conversations made about him when he is not there, the conversations with the doctor behind the door.
• She worries about the impact her illness will have on her children and grandchildren, but still wants to be with them more than ever.
As death approaches, the family may want to plan the funeral if it has not been planned so far. It is often helpful to think of a funeral as blessing one’s life. Family planning for the funeral has significant therapeutic value. Family members should be aware that the patient’s communication style may change as death approaches. Confusion can arise due to medications, illness, and awareness of impending death. These changes in consciousness may occur when family caregivers experience the most anxiety and insecurity regarding their coping skills.
The main purpose of the care of those with terminal illness is to ensure the physical and mental comfort of the patient, and in this process, each patient’s personality and value should be protected, to feel safe, to receive adequate treatment and care, and to die in peace without suffering. It is a human right, not a necessity.
The need for hospice or palliative care units for terminal patients in our country has increased even more today. Palliative care is to alleviate the somatic and psychological symptoms of the terminal patient in his journey and to support his preparation for an honorable death by increasing the psychosocial, existential and spiritual quality of life. In this process, the modern palliative care approach not only focuses on the patient, but also aims to support the relatives of the patients during the loss and mourning process as well as the disease process.
“The only good thing about death is that it won’t happen again,” says Nietzshe. Could it be a quality death? By controlling the physical symptoms of patients who are on the verge of death, with supportive treatments, we can at least provide them with a peaceful environment with their loved ones. In this last period, the treatment team now needs to consider the “quality of death” and “well-death” as well as the patient’s quality of life.
Peaceful/quality death; It is also closely related to where patients want to spend their last time, that is, to the choice of place of death. In our study, 7 people out of 10 stated that they wanted to die at home. When we look at the literature, the belief that it is better for the patient to die at home is common and preferred in both eastern and western societies. Unfortunately, despite the demand in this direction, 2/3 of the patients die in hospitals. The expression “There is nothing left to do medically, take your patient home” to the relatives of many patients in the terminal period, although it was said more often in the past, the increase in intensive care units today, the advancing modern technologies and the effect of drugs. Sudden unexpected death without any intervention or age-related “death by natural causes” has become history. We bid farewell to the patients in intensive care units on their last journey away from their loved ones and attempts made by artificially supporting all their organs connected to machines. Is it better to die at home? Why do people go to die in intensive care or hospitals while they prefer to die at home? Our house, room and bed are the symbols of trust, comfort, peace and comfort for all of us. Especially if your relatives and loved ones, whose presence you gain strength from in that house, are with you… But this desire, which is desired when they are healthy, starts to lose their health and especially in the terminal period reached after a long, difficult and troublesome cancer stage for everyone, most of the patients want to save their relatives from the burden of taking care of themselves at home or to save them more. They prefer to take them to the hospital with the belief that they can get good care and they cannot go out of there. The families of some terminal patients also prefer to spend their last days in the hospital due to burnout and the distress of not knowing what to do. Because it is not easy to know what to do in the face of multiple health problems of a terminal patient in the home environment, to be able to relieve the patient, at the same time to fulfill daily role-responsibilities, to handle an ever-increasing care burden and to maintain the right care.
Hospices as an Alternative to Death at Home or Hospital
“Do people have to suffer excruciating pain at the end of their lives? Do obsolete equipment, medical practices, and loneliness have to mark the last stage of life? No, death can be different, humane and honorable…” Cicely Saunders identified this 55 years ago and became the pioneer of palliative care. I cannot say that we have come a long way in this regard as Turkey. we are heading towards the bad end with an increasingly age-appropriate rhythm.
Hospices have been established in many countries, especially in the USA, Canada and European countries, to increase the quality of life and death quality of terminal patients. Hospices; They are institutions where supportive and comforting care practices are provided by a specially trained team for terminal patients with an incurable disease and their families. The purpose of the hospice; neither hastening death nor prolonging life! On the contrary, it is to ensure the approved life and accepted death, to reach the end in the normal process peacefully and to increase the quality of life. Hospices are accepted in patients with diseases such as neurodegenerative diseases such as muscular dystrophy and ALS, end-stage renal failure, end-stage chronic obstructive pulmonary disease, as well as terminal cancer patients.
A LOT OF STATISTICS FROM TURKEY
With the Death Notification System (ÖBS), which has been in use in our country since 2013, death records at the national level have started to be kept regularly. The system has a usage rate of 98% throughout the country. Analyzing the data on intensive care units for the period of June 2014 – May 2015 obtained from the Diagnosis-Related Groups (TİG) database of the Ministry of Health, Department of Statistics, Analysis and Reporting; patients stay in intensive care units for an average of 7.09 days, the mortality rate in intensive care units is 18.5%. In general, it is seen that 38.7% of the patients who were treated in intensive care units were hospitalized for “Circulatory System Diseases, 21.6% for “Newborn Diseases” and 10.9% for “Respiratory Diseases”. Intensive Care Units: They are the care and treatment units that give the opportunity to immediately apply all kinds of medical assistance to the patients who need to be kept under constant surveillance. When the distribution of the patients staying in the intensive care units by age groups is examined, it has been determined that the highest rate belongs to the patient group over +51 years old, with 59% of the patients. It was determined that 5 of them were discharged with healing and 18.5% of them lost their lives.
According to 2014 Statistics, 60 years + 12% of the World’s Population constitutes 11.7% of the population in Turkey, while it constitutes 22% in the high-income group countries and 21% in the WHO European Region. The region with the highest number of applications to a physician per capita is West Marmara, and the region with the highest bed occupancy rate is the Southeastern Anatolia Region.
Turkey’s population is 77,695,904; While the population rate of 65 y + is 8% in Turkey, the average age in Ağrı is 4%, Bitlis 4.5, Diyarbakır 4.4%, Şırnak 3%, Hakkari 2.9%, Istanbul 5.9%, while the highest average age is in Kastamonu 16.5%, Çankırı 15.3%, Artvin 14.8% , Izmir 9.7%.
Life expectancy at birth According to 2014 data, 71 in the world, 77 in Turkey, 76 in WHO European countries, 79 in high-income countries
When the causes of death are examined; It was observed that the ranking of the first three disease groups in 2014 did not change in 2015 as well. Circulatory system diseases took the first place, accounting for 40% of death cases in 2014 and 40.3% in 2015. In second place, deaths from benign and malignant tumors were 20.4% in 2014, and 20% in 2015. Respiratory system diseases, which ranked third, were calculated as 10.6% and 11.1% in 2014 and 2015.
When the cause of death statistics were analyzed by age groups; In 2015, circulatory system diseases were most common in the 75-84 age group, while benign and malignant tumors were most common in the 65-74 age group.
The number of intensive care beds, which was 2,214 in 2002, started to increase after 2010 and reached a total of 28,572 in 2014, of which 11,874 (41.6%) were affiliated with the MoH, 5129 (18%) were in universities and 11,569 (40.5%) were in private hospitals. .
In many countries, treatment of end-stage patients has been separated from classical intensive care and hospital services and transferred to private care centers. This application is combined with home care application and delivered to patients with mobile nursing, home mobile palliative care applications and complementary insurances under state assurance.
Terminal dönem kanserli hastalara yapılan tedavilerinin ekonomik yükleri giderek artan kronik, ilerleyici ve geri dönüşümsüz dahili hastalıklar (Alzheimer, demans, nörodejeneratif hastalıklar, psikozlar, kronik obstrüktif akciğer hastalığı, kalp yetmezliği, siroz, vb.) için de uygulanmaya başlamıştır. Yapılan çalışmalarla evde maliyetinin daha düşük olması sağlık giderlerini düşürdüğü, hasta ve hasta yakınlarının memnuniyetini arttırdığı gösterilmiştir.
Yapılan bir çalışmada yoğun bakımlara girmeden evinde veya bakım evlerinde ölenlerin haftalık bakım ücretleri 150-700 dolar arasın- da değişirken, yoğun bakım ünitesinde ölmüş kişiler için yapılan haftalık harcama 2550-5000 dolar civarındadır.
Türkiye’de de gerekli alt yapı düzenlemeleri ile birlikte sadece kanser hastaları için değil, tüm terminal dönem hastalar için uygun palyatif bakım ünitelerinin kurulması sınırlı olan kaynakların daha akılcı kullanımı için gereklidir.
Teşekkür; 2011 yılından beri Dünya Sağlık Örgütü ve Avrupa Palyatif Bakım Derneğinin ortak projesi olan ATOME ‘un expert liğini yaptım, son 5 yıldır Fransadayım Palyatif bakımların arttırılması ve son dönem kanser hastalarında kullanılan eksik opioidlerin Türkiyeye getirilmesi ve hastaların bu ilaçlara erişiminin sağlanması için uğraşılarım ve hükümetlere öneriler aşamasında katkılarım oldu. 2016 Temmuz ayında İstanbul’a döndüm. Bu konuda bana yardımcı olmak için bu çalışmamın anket ve veri değerlendirmesini öneren yöneten vizyonu geniş olan Doktorsitesi.com’un kurucusu Dr. Erden ASENA’ ya en içten teşekkürlerimi sunuyorum.
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http://www.tkhk.gov.tr/Dosyalar/4292ab83043844b7a1e68694155679b0.pdf
http://www.onfv.org/wp-content/uploads/2014/10/Chapitre4-Lieux-de-décès-en-France.pdf
Aksoy S. Ethical considerations on end of life issues in Turkey. In: Song KY, Koo YM, Macer DRJ, editors. Bioethics in Asia in the 21 st century (Eubios Ethics Institute), 2003. p. 22-3.
Gülbin Aygencel, Melda Türkoğlu Dahili Yoğun Bakım Ünitesindeki Terminal Dönem Hastaların Genel Özellikleri ve Maliyetleri Gazi Üniversitesi Tıp Fakültesi, İç Hastalıkları Anabilim Dalı, Yoğun Bakım Bilim Dalı, Ankara, Türkiye Yoğun bakım Yoğun Bakım Derg 2014; 5: 1-4
Vachon ML. Psychosocial needs of patients and families. J Palliat Care 1998;14(3):49-56.
Cancer patients’ satisfaction with doctors and preferences about death in a university hospital in Turkey Raika Durusoy a, Burcak Karaca b,*, Bermeth Junushova c, Ruchan Uslu
THOMAS Carol. The place of death of cancer patients: can qualitative data add to known factors? Social Science & Medicine, 2005, vol. 60, n°11, . 2597-2607
