Introduction

Death is a constant reminder to us mortal human beings of the inevitable and yet a finite end to our existence. No matter how wealthy or powerful a person maybe, the truth of the eventual demise in every one of us is unavoidable. Though all of us realise this fact, the issue of death is not commonly discussed. Therefore, people are often faced with discomfort when dealing with death and dying process, whether for themselves or their love ones.

We now no longer die at home surrounded by close family and friends, but in a strange environment called hospitals. Even though dying is a natural part of existence, most culture view death as a taboo and fearful topic which if not handle properly and dealt with directly become a cause of major anxiety to all parties involved.

According to Plato, true philosophers are always involved in the practice of dying; and Nichiren admonished us to “first study death, then study other matters”. Only when we understand death, can we focus our minds to answer questions of how and why on the process of dying in human beings.

Complexity of dying process in elderly

Currently elderly people may have different trajectories of death and dying because of the wonders of medical sciences, which have helped prolonged human life and postponing death. These modern ways of manipulating life have blurred the boundary between life and death, making prognostication of death in the elderly very difficult and complicated.

The recurrent chronic organ systems failure groups have much more long-term disabilities, with periodic exacerbations and improvement, and truly unpredictable timing of death. Examples are chronic recurrent lungs failure from chronic obstructive airway disease (COAD), recurrent heart failures, recurrent End-Stage-Renal failure (not for renal replacement therapy) and chronic liver failures with exacerbation and decompensation.

Another group of dying elderly has self-care deficits and a slowly dwindling course to death, which usually results from brain degenerative disease (dementia and late stage Parkinson disease) or frailty from strokes. In these two groups of elderly, the progression to death varies greatly. This is in contrast to older patients dying from any cancers whereby the progression to death is predictable and short, lasting 6 months to a year. As a result, planning for those with slow dwindling progression to death is difficult.

Cultural, religious and racial diversity in Malaysia adds to the complexity of dealing with issue regarding death and the process of dying, worsen the dying process.

Complication

Most people would choose not to think about matters regarding death rather than to discuss it openly. Death is viewed an enemy that should be defeated. There is a false belief that death can be overcome by the modern technology, equipment and medicine. But the truth is, death is inevitable ending for every living things in the world, and human is of no exception. Therefore, shouldn’t we be open about death and embraces it. Rather than avoiding it, we should focus on making everyone’s final moments here on earth as peaceful, comfortable and happy as possible.

Currently in Malaysia, there is a scarcity of expert geriatric palliative physicians to help improve the dying elderly quality of life and alleviate sufferings. Also it is quite disheartening to hear children insisting that doctors ventilate their 80-90 plus parents who are bedridden with chronic dwindling frail disorders, at all cost despite the futility of such actions. These difficulties are frustrating and its’ very presence should be the basis to improve the current end-of-life care for the elderly.

Importance of anticipatory or “advance care planning” and end of life preferences

• “The bottom line is how to do our best for someone who is dying and facing critical choices.” Getting end-of-life care “right” lies at the heart of what it means to be a civilized and cultured society and this should be our top priority.
• The most appropriate care for the dying elderly requires a holistic and realistic management plan for patients and their families in this critical period. Proper end-of-life care is essential in keeping the patient’s quality of life in high regards in such an uncomfortable situation.
• Standards of care include multi-disciplinary approach and holistic care with symptom control, sensitive psychological and spiritual support consistent with the patient’s and families’ culture and wishes, regularly reviewed.
• Early discussions and planning with the dying patients and their families about their future preferences regarding medical interventions and end-of-life care choices is very important when the elderly is still moderately healthy.  Otherwise they could be too ill to discuss their opinions and options.  Anticipatory care or “thinking ahead” deals with discussions at the current relatively healthy state and about how the disease will progress i.e.:
  • what symptoms or psychosocial issue they will develop;
  • what will the terminal events be;
  • what is the preferred place of care and death until the death and beyond.
  • what to do during crisis,
  • who to care and other requests for example special instructions and legal matters should be discussed in advance.
• In many countries there is availability of “Advanced Directives” or a “Living Wills”, a document that expresses the patient’s wishes on life-sustaining treatments, such as ventilator, tube feedings, pain-management, and other forms of end of life care.  Most patients want to die in the comfort of their own home surrounded by their loved ones.  Some may even want to do a living funeral in which family members and friends honor his life in his presence before he passes away.

Coping and adjusting with caring

“Good death” as defined by modern Western cultures requires the following elements3:

• Pain-free death
• Acceptance and acknowledgment of death when it is imminent
• To die at home
• To have family and close friends around
• To be able to resolve conflicts and unfinished business
• Death as personal growth
• To die in accordance to personal preference
• To have a death that reflects a person’s individuality

In addition, caring for a dying elderly also provide one of the greatest moment in life to learn about the human soul. In the process of caring for the dying loved one, some families became closer and united. In contrast, other families fought, became chaotic and very bitter when handling their loved one.

Regardless, most caregivers frequently have to face with sense of lack of knowledge, poor coping skills, psychosocial and financial inadequacy, fear, resistance and are often left alone in isolation when dealing with the dying elderly. There is a need for adaptation and rearrangement of career, lifestyle and commitments. Yet despite the presence of these difficulties, we should continue caring as this is a process that can fill the caregivers with the growth of the soul in its appreciation of its relationship to life.

Caregivers’ attitude remains the most essential aspect of caring for the dying elderly. A hopeful, sincere and never give-up attitude will be useful to help cope, adapt and accept the situation squarely and comfortably.  Sound knowledge about death and dying process as a part of life will help us cope and manage the situation better. Reading, talking and learning from health care staffs will help to equip caregivers with knowledge and skills to handle their close ones. A lot of the bickering, arguments, quarrels and breaking up of once a closely knitted family are a result of lack of communication and when caregivers are left alone in dealing with the messy situation. Ventilating out problems and feelings to their families and friends, taking care of their own needs, having some time for themselves and continue to care cheerfully is very important. Otherwise their emotions will have negative impacts on their dying loved ones. Example of situation where caregivers are not coping well with stress is when they:

• do not know  for how long they are going to be giving care at home.
• feel that the decision of caring is forced on them rather than having freely chosen it.
• do not have the training, information or skill needed to provide care.
• have competing demands between their  role as a caregiver and other roles in their life eg. as mom, daughter-in-law, wife etc.
• have loss of social contacts and social life.
• have feelings of guilt.
• have financial losses or difficulties.
• have to carry out tasks which they find unpleasant or embarrassing.

References

1. Daisaku Ikeda, Unlocking the Mysteries of Birth and Death….and Everything in Between, pg77-104, 1988, Middleway Press, US
2. S T A Seah, J A Low, Y H Chan, Symptoms and care of dying elderly patients in an acute hospital, Singapore Med J 2005; 46(5) : 210
3. Clark D. Between hope and acceptance: the medicalisation of dying. BMJ. 2002; 324(7342): 905-7.
4. The Natural Death Handbook: Chapter 5 Practical Care for the Dying. http://www.globalideasbank.org.