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Indian J Palliat Care. 2012 Sep-Dec; 18(3): 226–229.
PMCID: PMC3573479
End of Life and Life After Death - Issues to be Addressed
Poojar Sridhar, Pramod Kallur Parameshwar Renuka, and Ravikiran Bonanthaya
Department of Radiation Oncology, Kidwai Memorial Institute of Oncology, Bangalore, Karnataka, India
Address for correspondence: Dr. Sridhar P; E-mail: sridharkmiort/at/rediffmail.com
Being an Oncologist, I have seen many patients suffering from cancer. It pains a lot looking at them fighting the battle of life, though knowing that they would lose miserably and surrender meekly as majority of the patients report to the hospital at an advanced stage of disease and only palliative care may be the option. There is an urgent need to create - Cancer Awareness in the villages and also about the end of life care in all terminally ill patients. 20 patients in the terminal phase were questioned regarding end of life care. The common questions they asked are, why has God punished me like this? Why me on earth? Should I die so early? Why should I leave my near and dear ones and go far away, from the point of no return? Do I ever see them again? With deep sorrow and sigh, they suffer till the last breath, having the feeling of insecurity as what would happen to their dear ones. In the terminal phase, the patients wishes must be respected and their needs must be fulfilled. The health care professionals should plan an appropriate care for each patient. Most of them feel that the best place to be in end of life is the home. Research has shown that Hospice care may improve the quality of life of a patient who is dying and of the patient's family. Communication about end of life care and decision making during the final moments of a person's life are very important. The patients suffering are mainly due to the physical, psychological, social and spiritual issues. Death of a terminally ill patient should never be a sudden loss. All healthcare professionals, Social workers and Non-Governmental Organisations must install the life after death of the person, who has struggled for every breath and assure that he/she shall rest in peace and shall smile seeing their near and dear ones living with dignity and pride in the society. Ultimately, the patient must have dignity in dying.
Keywords: Bereavement, Grief discussion board, Life after death, End of life
Being an oncologist, I have seen many patients suffering from cancer. It pains a lot to look at them fighting the battle of life, though knowing that they would lose miserably and surrender meekly as majority of the patients report to the hospital at an advanced stage of disease. There is an urgent need to create cancer awareness among the villagers. To digest the fact that they are named as a case itself takes a toll on their mental strength. A little more of concern and care brings a smile even in the sickest of patients. In the Indian context, there is a lack of end-of-life care. People are not aware of the advanced care planning as they are not informed about the prognosis of the disease and are given false hopes and assurances of cure.
Proper respectful addressing and good counseling boosts up a patient's confidence and ultimately makes a change in his or her approach toward tackling the disease and life. An unseen force drives them to endure the pain and builds up their tolerance. Majority of them would be cursing God, blaming for the disease. They must blame themselves first for all the bad habits they were into - smoking, chewing tobacco and unhealthy lifestyle, and second for not visiting the hospital early for the diagnosis and treatment.
The purpose of life on earth is to learn and grow through hard lessons and choices. Every one of us faces problems at some stage or the other. Dying is only a transition to a different form of life.[1] It gives immense sadness to see our near and dear ones dying. The grieving process might take its own time: from months to years. We begin to question the existence of God. Many questions in life are left unanswered. Why has God punished me like this? Why me on earth? Should I die so early? Why should I leave my near and dear ones and go far away, from the point of no return? Do I ever see them again? With deep sorrow and sigh, they suffer till the last breath, having the feeling of insecurity as what would happen to their dependants. Death is a very natural and unavoidable fact of life.[2] Participation of the community is very important for good death[3] one that is free from all avoidable distress and suffering for the patients, family members and care givers. The patient's suffering is due to the physical, psychological, social and spiritual issues.
In the terminal phase, health care professionals should plan an appropriate care for each patient as it requires expertise in dealing with the dying patient and depressed relatives.[4] The clinical situation changes rapidly and one needs to have the skill of fulfilling the wishes of the patients and those who are close to them, enabling them to die with dignity and comfort. It helps in social support, psycho spiritual support, nursing care and medical clinical management.[5] The best place to be in end of life is the home. Research has shown that hospice care may improve the quality of life of a patient who is dying and of the patient's family. Communication about end-of-life care and decision-making during the final moments of a person's life is very important. The main worry in the patient's mind is fear of abandonment and fear of being a burden on the family.
Community forms the base of the triangle toward attaining good palliative care coverage of the sick and diseased people. Help must be in the form of relieving social isolation, alleviating poverty, establishing contacts assuring family support and building up the sense of security of their people even after they are gone.[6] People who have already discussed their wishes for end-of-life care with their loved ones feel less stressed at the end of their lives and so do their families. They can give advanced directives, which are legal documents that record a person's wishes for end-of-life care or that can also name a person to be a decision-maker when they are unable to do so.
Making decisions regarding the affairs, taking care of finances, making a will, how they want to live the last days, how they want to be buried should all be discussed. The main concern will be the responsibility of their families. The best way to make a will is through a solicitor, which helps in preventing any legal problems arising later on. Health care professionals can allay the fear by allowing the person to express. They must be prepared to listen, giving a good company, talking, watching movies and reading, assisting in keeping the objects that are meaningful to person close at hand, re-assuring the patient that the advanced directives such as a living will be honored and will respect the person's need for privacy. Allowing to review their life like spending happy moments with family and friends will be cherished even after the person is gone.
Predicting death is difficult as the phase of dying is unpredictable. The invasive and inappropriate investigations should be avoided. The unrealistic expectations of the family should be alleviated. Unnecessary hospital visits and intensive care unit admissions can be avoided by diagnosing the deterioration of the patient. The condition of the patient, facts and truth of life should be explained to avoid dissatisfaction, loss of trust and difficulty in bereavement.
Assessment of the patient should be done meticulously. The patient's feeling and thinking must be known. Physical pains and distress should be taken care of with proper medications. Psychological comforts and peace should be given. Unfinished works should be probed and handled with positive reassurance and empathic approach. Spiritual distress like unresolved conflicts, guilt, fear and loss should be tackled. This is the time for the patient to look back and to look forward. Patient is more comfortable talking with whom he likes the most.[7]
Death should be an anticipatory grief and never a sudden loss. There is no need to hurry with arrangements. The family members may wish to sit with the body and express their feelings. Respect the body by placing properly, and when the family is ready then go ahead with the rituals. All facilities to preserve the body should be done when there is delay in performing the final rites. Emotional support for family members to cope with their loss should be given. Health care professionals are the appropriate authorities that carers must contact in accordance with local regulations and inform.
Bereavement
People closely affected by the death of family members include home residents, staff and volunteers, staff from a variety of health and social care organizations, as well as carers, including children. Children may need tailored support to cope with the loss.
Families and carers of people, who have died suddenly or in an unexpected way, as well as those who were expecting death, should have access to information and support appropriate to their circumstances. People closely affected by a death should be communicated to in a sensitive way and are offered immediate and ongoing bereavement, emotional and spiritual support appropriate to their needs and preferences. People must feel that information and support was available to them around the time of death and afterward, which was appropriate for them and offered at the right time.[8]
Bereavement support must not be limited to immediately after death, but may be required on a longer-term basis and, in some cases, may begin before death.
An approach to emotional and bereavement support may be appropriate, which could include: information about local support services, practical support such as advice on arranging a funeral, information on whom to inform of a death, help with contacting other family members and information on what to do with equipment and medication, general emotional and bereavement support, such as supportive conversations with generalist health and social care workers, or support from the voluntary, community and faith sectors.
People affected by a death may be referred to trained bereavement counselors or mental health workers for more specialist support to overcome the loss of near ones and to cope with life after the death of their loved ones. The service providers, health care workers and social workers must play a pivotal role in executing things appropriate for that crucial time. Community participation is crucial for people who are suffering; no patient must be left isolated from the society.[9]
Bereavement care center
It provides comprehensive care and aggressive counseling, and supports the family members. It also provides services for the terminally ill and for those recently bereaved. It promotes the well-being of bereaved people and to enable anyone bereaved by death to understand their grief and cope with their loss.
Grief discussion boards must be set in where men and women can discuss issues related to grief and death. It opens up the mind. It gives the insight of value of life. It strengthens the living to face the death boldly. It provides support for grieving children and those caring for them. It rebuilds the confidence that living is for everyone.
We must all help bereaved children and young people and rebuild their lives after a death in the family by offering practical support and guidance to families, professionals and anyone concerned about a grieving child. The interest and inspiration of all who share the ideal of quality care at the end of life for all must be given importance. The feeling of awakening within should be installed and life values should be prioritized; the spiritual odyssey of new insights of life must be explored.
The responsibility of the palliative care team does not end with the death of the patient. They must review and introspect for the care they have given from the time they were associated with the person till the end of their life.[10]
The questions to be answered are:
Was the patient at peace in his death? Was the pain and suffering relieved? Was the patient given the chance to express his feelings? Was everything done right? And where things could have been done better?
People need information that should be in a common easy-to-understand language, easy to digest and which would help them to take the decisions suitable to them and their family. In the end-of-life stage, patients are not worried about themselves but the thoughts and feeling of insecurity of their kids and near and dear ones take a toll on them.
We must help them prepare for the inevitable. Let them know the facts, instead of giving false hopes. Convince their relatives that whatever best possible has been done, and also future course of action must be explained in simple words. Never create a state of shock for them, as they are already in the most stressful state of mind. Things can go wrong when mind and body are in the most depressed state. We must come to terms that we all must meet an end one day or the other. We must see both sides of the coin – life and death. All that remains for us now is to rise and overcome the major hurdle in life.
All health care professionals and social care professionals involved in instilling life after the death of a person who has struggled for every breath shall smile seeing his/her people living with dignity and pride in the society. Ultimately, the patient must have dignity in dying.
Footnotes
Source of Support: Nil.
Conflict of Interest: None declared.
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Articles from Indian Journal of Palliative Care are provided here courtesy of
Medknow Publications