End of life

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Ojum EkeomaOgwo

My Igbere people have a proverb “ma anagh akpotu onwu afia, ya du elee onagh egbu-egbu. Translation “if death is not regularly mentioned, it’s terminal status will not be appreciated.”

In Nigeria approximately 1.5 million people die every year. Doctors battling to prolong life must recognise when life is ending, in order to continue caring properly for the patients. Unfortunately most of our clinical practice does not include significant attention to end-of-life-care.

End of life care, refers to focusing care for those approaching death, on the goals of relieving distressing symptoms, and promoting quality of life, rather than attempting to cure an incurable disease or prolong life.

Prof Ikeme, used to tell us as medical students in Unijos – that end of life care is like British diplomacy with a stiff upper-lip. Where, when a Briton tells you to “go to hell”, you will go home with a mistaken pleasure, and start packing your bags. That is you will literally be looking forward to the journey, because of how the “go to hell” was couched. That we must achieve such exactitude in end of life care.   Just wait a minute, let me attempt defining “end of life”. Medically, end of life may be defined as that time when death – whether due to terminal illness, acute or chronic illness, or age itself is expected within weeks or months, and can no longer be reasonably forestalled by medical intervention.

The duty of doctors is to help patients understand when they are approaching the end of life. This information influences patients treatment decisions (called medical inactivity), and may change how they spend their remaining time.

Expectations about end of life

• Patients experience at the end of life are influenced by their expectations about, how they will die and meaning of death.

• Many people fear how they will die, more than death itself.

• Patients are afraid of:

1. Dying in pain.

2. Dying by suffocation.

3. Dying by loss of control.

4. Losing their dignity through death.

5. Dying in isolation and

6. Being a burden to their families.

All these anxieties could be alleviated with good supportive care, provided by an attentive group of care givers and families.

• Death is often regarded by doctors, patients and families as a failure of medical science.

• This attitude can create or highten a sense of guilt about the failure to prevent dying.

• Many religious people who view “end of life” as an act of God, handle deaths better.

Caring for the family.

• In caring for patients at the end of life, doctors must appreciate the central role played by the family, friends and romantic partners and often must deal with strong emotions of fear, anger, shame, sadness and guilt experienced by those individuals.

• The threatened loss of a loved one may create or reveal dysfunctional or painful family dynamics.

• Doctors must be attuned, as I have personally witnessed ad infinitum, to the potential impact of illness on the patient’s family, substantial physical care-giving, responsibilities and financial burdens, as well as increased rate of anxiety, depression, chronic illness and even mortality.

• Family care givers especially, typically women, commonly provide the bulk of care for patients at end of life. Yet their work is often not acknowledged or compensated.

Communication at ‘end of life’

The most difficult aspect of a doctor’s job, is to communicate the death of a relative to loved ones. In particular doctors must become proficient at delivering bad news and then dealing with its consequences.

The following are suggestions for the delivery of bad news.

1. Choose an appropriate place and time.

2. Address basic information needs.

3. Be direct, avoid jargon and euphemisms.

4. Allow for silence and emotional ventilation.

5. Asses and validate patients reactions while dying.

6. Respond to immediate discomforts and risks.

7. Listen actively to family members and express empathy.

8. Achieve a common perception of the diagnosis and cause of death.

9. Reassure family that the patient died peacefully.

10. Ensure basic follow up to members of the family, especially if the illness is hereditary.

Doctors can help families confront the loss os a loved one. Identify a spokesperson for the family and tell the person everything, for onward transmission to family members.

Conclusion: Nobody requests for hot water, in anticipation that he will sustain a fall from a tree. We should be able to endure whatever nature throws at us, including death. We must always be medically guided.

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