Quality of life strategies
The participants perceived that the quality of life of terminally ill people is compromised by factors such as lack of control over one’s own life, the seemingly long wait for death to occur, fear of dying, dissatisfaction with life in general, worries about the welfare of survivors, complete dependence on others on account of illness, ill-treatment or insensitive treatment by care takers (including family, health care providers, and community), the pain and humiliation experienced on account of this, and the feelings of complete worthlessness resulting thereof, and unfulfilled wishes and desires. All these factors contribute to elevating the anxiety level of the terminally ill-patients. Taking into account the prevailing perceptions and attitudes regarding death, dying and terminal illness the researchers suggest the following measures that would contribute to reduction of anxiety, better acceptance of death, and improve quality of life of terminally ill persons.
Training for healthcare providers
A review of the existing curriculum of medical colleges in India points to the gaps in sensitive patient and care giver handling procedures particularly in issues such as death, grief and bereavement. Medical students stand to benefit by increasing their emotional understanding of the patients. Such an approach would compliment their sense of objectivity in consideration of the disease, particularly as they are taught to be emotionally strong as deaths and impending psychological pain is a part of their daily routine. (Lasagna, 1970). Planned in service training in better communication and information strategies about terminal illness to patients and family members, for doctors already in practice would be very useful.
Informing terminally ill patients about their condition
On the basis of the response elicited from the participants and recommended practice relating patient information on their terminal status (Glaser and Strauss, 1965), the researchers feel that the decision to inform should be made by medical practitioners on a case by case basis, after due consideration of the terminally ill patients’ situation. An assessment of the prevailing state of mind, strengths and attitude to accept the reality of death, and the capacity of individual patient to deal with the knowledge of their terminal disease, form the basis for making this informed decision, not withstanding its inherent conflict with the rights of patient to information about their condition. For this, doctors would benefit by training. Such training may include clinical assessment skills and also skills to monitor, minimise the adverse effects that such information could have on the patient as well as their survivors.
Active grief and bereavement counseling for families and patients
Terminal illness has consequences for the patients, family members and other survivors intimately connected with the patient. The participants clearly indicated, that concern and anxiety that terminally ill patients have about their survivor, is an issue. In fact, a conclusive definition of good death from this study is the ability to prepare loved ones for one’s death and learning to detach oneself so that one may die peacefully. Therefore it is important to involve the families of terminally ill persons, from the time of disclosure of terminal illness to preparing for the end. As on of the participant said care with human touch by family members can be very helpful in healing the dying patient. Few other participants said “Acknowledging, accepting and validating terminally ill patients’ doubts and problems, by being with them, sharing one’s own feelings and emotions, would also constitute a part of the bereavement process.
Waiting for death at the terminal stage is a very painful experience for patients, especially as they have little control of their own lives. For counselors and therapists it is important to consider an in depth analysis of patient’s thoughts, apprehensions, and anxieties, about their life, their achievements, and their personality before developing their counseling approaches.
To break the silence surrounding death, and to dispel fears, and to demystify death (from being perceived as something fearful or bad and to increase acceptance of death as a law of nature), death education could be introduced in schools, so that children may develop a right attitude towards death as adults.
Strengthening hospice and palliative care
A nation wide movement to develop more hospices as health care facilities is needed particularly in India, in order to provide a more meaningful palliative care. Palliative care aims to control distressing pain or symptoms, assist in treatment of terminally ill patients in more homely comfort and has potential to meet spiritual needs of the patients, in addition to providing bereavement counseling. Hospices, much like homes continue routine clinical nursing care and support services to terminally ill persons, apart form lending an atmosphere of pleasantness with gardens, flexible visiting hours, opportunities for fun with family members, relatives and friends of terminally ill and several diversion activities to engage patients in pursuing their hobbies, if they like. In palliative care, religious or cultural practices are respected as
patients exercise choices to go and pray to their respective religious beliefs or to participate in important rituals preparing for death, like recitation of the Hindu scriptures of Bhagwad Geeta or scriptures or receive the sacrament from a Christian priest. Patients may be provided services such as transportation from hospital to their family homes, or if they chose to stay at their family home, medical help to enable patients to stay at home and offering bereavement counseling.
The concept of palliative care has not gained much popularity in India and it is still available for specific diseases like final stage of cancer attached to some large specialty hospitals in the country. Little is known about the type and quality of care provided by these hospitals in the absence of impact studies on their strengths and interventions. The researchers recommend that an intervention and outcomes research pilots to test the feasibility and sustainability of palliative care through hospices is needed.
Including spiritual discourse on death
India is a land of tradition of spiritual and faith healing. Its people irrespective of their religious persuasion have strong belief in prayer as a method of healing. This inclination can be positively geared particularly towards the end of life, through discourses from spiritual leaders. This would lead to greater acceptance death and coping with pain, living through suffering and loss and developing active detachment.
Helping the terminally ill patients in fulfilling their last wishes
Participant responses indicated that people begin to introspect when faced with the prospect of death. As said earlier in the discussion those who are dying have a need, among others, for conciliation, strengthening their ties with family, friends and relatives, resolving conflicts and planning disposal of their possessions. They look for reassurance that their dependents would be taken care of. Listening to their wishes and desires with empathy, and where possible and feasible, helping them to realise these wishes and desires, by communicating these to their family members, could be included as a therapeutic goal and as a strategy to improve their quality of life.
A veil of silence shrouds the discourse on death. A majority perception as a process marked by pain, suffering and fear, has taken many respondents to explore their philosophical inner core. As the concept mapping research illustrated the notions and meanings attached to good and bad death are important to the acceptance of death. ‘Good deaths’ make acceptance of the death easier, while ‘bad deaths’ make acceptance difficult, painful and even traumatic. Acceptance is also the key to coping with the knowledge of impending death and preparing oneself for its occurrence. The belief in past life or karma seems to make the acceptance of death easier. Sharing the right information about illness with the patients is very important so that patients are realistic and accept death. A terminally ill patient with sufficient knowledge
about the condition assists himself/herself in self- coping and assists the survivors in better coping.
The researchers believe that it is possible to perceive dying as a process characterised by more dignity than mystery and improve the quality of life of terminally ill patients through training of health care providers in effective communication, active grief and bereavement counseling, death education, and strengthening of hospice and palliative care in India. Given the dearth of research in this area in India, there is a need for further studies also to account for cultural and regional differences in perceptions and attitudes towards death, among terminally ill patients. Additionally studies are needed on existing palliative interventions, in order to test, develop and run pilots that take note of the linguistic, cultural and regional diversity of India. And finally to develop strengths based perspectives of psycho social interventions the first step is to ‘LISTEN’ to what dying people have to say to enable them to cope better.
The broad goals and methods of comfort care near the end of life should reflect the informed
patient’s wishes. Table 1 briefly summarizes communication techniques that can be used to
help terminally ill patients identify their values, goals, and preferences. The plan of care can
then be aligned with the patient’s wishes.12 Such conversations about goals of care are essential when the withholding or withdrawing of lifesustaining interventions (e.g., dialysis or cardiopulmonary resuscitation) is being considered and as an aid in choosing appropriate diagnostic tests (e.g., positron-emission tomography–computed tomography or monitoring of vital signs).
Discussions about setting goals at the end of life are associated with greater congruence between patients’ wishes and the care that they receive during that time, and such discussions are correlated with the use of fewer aggressive, life-extending interventions (e.g., mechanical ventilation and resuscitation), as well as with end-of-life care that is consistent with the patient’s preferences, fewer deaths in the intensive care unit, and earlier referral to a hospice.17,18
Understanding Comfort Care
Comfort care requires the meticulous palliation of troubling symptoms and offering of skilled
psychosocial and spiritual support to the patient and the patient’s family (Table 2). However, the
term is often used in a misleading or imprecise manner — for example, when such care is automatically considered equivalent to a do-not-resuscitate order and, perhaps even without discussion with the patient,23 is extrapolated to mean the exclusion of a full range of palliative measures appropriate for a dying patient. Rather than simply writing orders for “comfort care”
(or “intensive comfort measures,” the term that we prefer), the medical team should review the
entire plan of care and enter explicit orders to promote comfort and prevent unnecessary interventions.
Infrequently, a focus on comfort care may include the use of potentially life-sustaining measures, when these are consistent with a patient’s goals (e.g., when the patient wants to be
kept alive with mechanical ventilation until a loved one can visit from afar or when withdrawing
a treatment conflicts with the patient’s religious beliefs or cultural norms).11 In addition,
the use of invasive interventional procedures, such as thoracentesis for the treatment of symptomatic pleural effusions, can promote comfort.
Peningkatan kualitas hidup pasien pada kondisi terminal
Kualitas hidup pasien dengan penyakit terminal sangat dipengaruhi oleh kurangnya kontrol atas hidup, menunggu lama untuk kematian terjadi, takut mati, tidak puas dengan kehidupan secara umum, kekhawatiran tentang kesejahteraan keluarga yang ditinggalkan, ketergantungan penuh pada orang lain selama sakit, perlakuan buruk atau perlakuan yang tidak peka oleh petugas kesehatan (termasuk keluarga, penyedia layanan kesehatan, dan komunitas), rasa sakit dan penghinaan yang dialami karena hal ini, dan perasaan tidak berharga akibat sakit, dan keinginan yang tak terpenuhi. Semua faktor ini berkontribusi meningkatkan tingkat kecemasan pasien yang sakit parah. Dengan memperhitungkan persepsi dan sikap mengenai kematian, para peneliti menyarankan langkah-langkah berikut ini akan memberikan kontribusi untuk mengurangi kecemasan, penerimaan kematian yang lebih baik, dan meningkatkan kualitas hidup pasien sakit parah (Manghrani dan Kapadia, 2006).
Penyakit terminal memiliki konsekuensi bagi pasien, anggota keluarga dan orang lain yang secara intim terhubung dengan pasien. Sebenarnya, definisi pasti tentang kematian yang baik adalah kemampuan untuk mempersiapkan orang yang dicintai untuk kematian dan belajar melepaskan diri sehingga seseorang dapat meninggal dengan damai. Oleh karena itu penting untuk melibatkan keluarga pasien yang sakit parah sejak saat pengungkapan penyakit terminal untuk persiapan sampai akhir (Manghrani dan Kapadia, 2006).
Menunggu kematian di stadium terminal adalah pengalaman yang sangat menyakitkan bagi pasien, terutama mereka yang hanya memiliki sedikit kontrol atas kehidupan mereka sendiri. Bagi konselor dan terapis penting untuk mempertimbangkan secara mendalam analisis pikiran pasien, kekhawatiran dan kecemasan tentang kehidupan mereka, dan kepribadian mereka sebelum mengembangkan pendekatan konseling (Manghrani dan Kapadia, 2006).
Pasien yang sekarat memiliki kebutuhan, antara lain untuk konsiliasi, memperkuat hubungan mereka dengan keluarga, teman dan keluarga, menyelesaikan konflik dan merencanakan pewarisan harta benda. Mendengarkan keinginan mereka dengan empati, dan bila memungkinkan membantu mereka mewujudkan keinginan ini dengan mengkomunikasikannya kepada anggota keluarga mereka, dapat dimasukkan sebagai tujuan terapeutik dan sebagai strategi untuk meningkatkan kualitas hidup pasien (Manghrani dan Kapadia, 2006)..
Diskusi tentang penetapan tujuan di akhir kehidupan dikaitkan dengan kesesuaian antara keinginan pasien dan perawatan yang mereka terima selama waktu itu, dan diskusi itu berkorelasi dengan perawatan yang lebih sedikit agresif, intervensi untuk memperpanjang hidup (misalnya, ventilasi mekanis dan resusitasi), serta dengan perawatan akhir hidup yang sesuai dengan pilihan pasien (Blinderman dan Billings, 2015).
Perawatan yang nyaman membutuhkan pengurangan gejala yang mengganggu serta dukungan psikososial dan spiritual kepada pasien dan keluarga pasien. Namun,istilah ini sering digunakan secara menyesatkan atau secara tidak tepat. Misalnya, bila perawatan tersebut dilakukan secara otomatis dianggap setara dengan do-not-resuscitate order dan bahkan mungkin tanpa diskusi dengan pasien, diekstrapolasikan mengesampingkan serangkaian tindakan paliatif yang cocok untuk pasien yang sekarat. Bukan hanya menulis perintah untuk “perawatan paliatif”, tim medis harus meninjau ulang seluruh rencana perawatan dan memasukkan perintah eksplisit untuk mempromosikan kenyamanan dan mencegah intervensi yang tidak perlu (Blinderman dan Billings, 2015).
Tidak jarang, fokus pada perawatan paliatif mungkin termasuk penggunaan yang berpotensi mempertahankan kehidupan. Langkah-langkahnya, bila ini konsisten dengan tujuan pasien (misalnya, ketika pasien menginginkan tetap hidup dengan ventilasi mekanis sampai orang yang dicintai bisa berkunjung dari jauh atau saat menolak pengobatan yang bertentangan dengan agama, kepercayaan atau norma budaya pasien) . Selain itu, penggunaan prosedur intervensi invasif, seperti thoracentesis untuk pengobatan simtomatik efusi pleura, bisa meningkatkan kenyamanan (Blinderman dan Billings, 2015).