Table of Contents
Stages of Dying
Dr. Elizabeth Kubler-Ross described the following stages of dying: shock, denial, anger, bargaining, depression, acceptance, and decathexis.
When individuals and their relatives are first confronted with the news of a fatal disease, they are shocked. They cannot accept that the illness could affect them (stage of denial). Then they become angry with the universe, environment and the physicians for their illness. In the next stage they “bargain” with the universe/God to cure them and to prolong their life. Once the disease progresses, they become depressed which is soon followed by acceptance of their fate. In the final stage, they emotionally withdraw (decathexis) and blank out all thoughts of death.
A person going through all these stages is able to set his/her affairs in order, make peace with friends, relatives, and enemies and say goodbye. Unfortunately, not everyone goes through all these stages. When deaths occur suddenly e.g. following a traffic accident, there is no time to say goodbye and there is no closure for the loved ones.
Process of Dying
A majority of patients will follow one of the following paths:
- Progressive steady functional decline over a statistically limited period e.g. in malignancies
- Indefinite prolonged and severe functional decline e.g. Alzheimer’s dementia, disabling stroke or musculoskeletal/ neurological diseases
- Irregular, unpredictable sudden exacerbations decreasing functionality e.g. cardiac failure or chronic obstructive pulmonary disease (COPD)
- Sudden death in otherwise healthy individuals e.g. following myocardial infarction or cardiac arrest, traumatic/accidental deaths
It is difficult for physicians to predict the timing of death but taking into consideration that the patient has a fatal illness which is likely to worsen and death could be imminent within the next 12 months, an estimated time period could be provided. In addition, the physician should:
- Inform the patient (and their family, with the consent of the patient) regarding the course of the illness, and range of probable survival period.
- Discuss end of life care – palliative/hospice/resuscitation with the patient and their caregivers. Patients should be provided an opportunity to participate and choose their preferences.
- Arrange for care
- Provide medications for symptoms: Opioids are the mainstay for management of pain but are associated with side-effects like constipation which will also require medication
- Address patient’s ethical, financial and legal issues
- Manage the patient’s and their caregiver’s stress: arrange religious support; prescribe anxiolytics
Fears/ Goals at the End of Life
Different people have different goals:
- Some people want to be independent as long as possible
- Some want spiritual solace and reconciliation or want to ensure that their loved ones are provided for
- A few want to prolong life irrespective of the cost and stress caused to their families
However, almost all are afraid of dying alone, and in pain. A majority of the patients want to discuss end of life care when they are mentally and physically relatively healthy and they also prefer to involve their family members. It is important for physicians to understand, address and involve the patients and their families in this process.
Health care costs have been steadily increasing and often families spend all their savings to prolong the life of a loved one. Families should be advised to investigate the cost of medical care, and insurance coverage necessary to care for a dying family member and determine whether they are able to afford it.
Fatal illnesses are associated with progressive functional disability and patients may not be able to care for themselves. Services such as home care, occupational and physical therapy add to the cost. The health care team should discuss all these issues when discussing options and choices for the patients.
Legal and Ethical Issues
It is important for physicians and health care teams to be aware of the laws concerning physician-assisted suicide, euthanasia, power of attorney, living will and advance directives as they can vary geographically. Only a few states in the United States have laws for physician-assisted suicide. In other states, opioids have to be titrated to provide pain relief and to avoid respiratory depression.
Palliative Care and Hospice
Palliative care encompasses measures to relieve physical, emotional and spiritual issues. It can be and ideally should be, provided concomitant with curative treatments. Palliative care teams are interdisciplinary and consist of physicians, nurses, social workers, chaplains etc. who together help to resolve the patient’s stress.
On the other hand, hospice care is restricted to those who have six months or less to live and aims to provide relief but not cure. Services included under hospice care include nursing, physical care, medications, spiritual counseling, and providing medical equipment like oxygen cylinders, masks etc. Hospice care can be either hospital based or home based. Patients have the option of enrolling in hospice care or leaving it and re-enrolling in it later.
Planning for Death
Symptom relief is the most important aspect of death planning. A comfort kit consisting of opioids and oxygen is provided by the hospice team for home based care along with instructions about using it.
Family members and caregivers should receive information about delirium, confusion, dyspnea, bluish discoloration of the skin, death rattle etc.
Organ donation, autopsy as well as funeral arrangements should also, if possible, be discussed prior to death to diminish the stress.
The death of a loved one can be very stressful for families and caregivers. Once a physician has confirmed the demise, a death certificate is provided to enable the funeral directors to carry out their jobs.
Informing family members should be done with respect, composure, and sensitivity. Families and caregivers may need psychological support as well as anxiolytics as they grieve and come to terms with the inevitability. This is especially important in sudden deaths.