The one thing certain in life is that we will all eventually die someday. It maybe today, tomorrow or thirty years from now, but the truth remains that it is inevitable. And yet, even with this certainty, we make no plans for it. There is a popular joke that during the middle ages (5-15th century) people openly discussed their death but very rarely spoke about their finances and sex lives. Today, reverse is the case; we rant openly about finances and sexual escapades but heaven forbid we broach the subject of death.
We live in a state of denial, everyone assuming that he or she will leave to the magical age of hundred and then pass away glamorously in our sleep. Humans are hard pressed to think about the process of dying itself- Will it be painful? Will I have a terminal illness? Who will take care of me? How do I cope?
These are hard but very necessary questions that we should ask ourselves.
When people pray for long life, my ‘ameen’ is always hesitant. This is because I have seen more people suffer in their old age from terminal illnesses than I care to count. I know what it feels like to tell patient relatives that their loved ones may never recover and can only lead to death. My fear and sadness, however is not the death itself.
It is the space in between.
A friend of mine recently called me, voicing out her anger and frustration. Her aged mother had been discharged from the hospital. She was 87 years old and this was her third stroke in addition to many complications. She was barely conscious and required help feeding through a tube inserted through her nose. My friend was angry at the fact that despite her mother’s condition, the hospital was discharging her with the understanding that there was nothing more that could be done for her (my friend’s mother). I promised to look into the case.
Later, I would find that the patients vital signs were indeed stable and further palliative care could be carried out at home. Her mother’s case was terminal and quite frankly the doctors were not doing much for her. Also, she was occupying valuable bed space. Callous, right? But true. In Nigeria, bedspace in a tertiary hospital is gold. And so, we would rather use it for a patient who has a decent chance of surviving than keeping a terminally ill patient.
Many of us know of people who are terminally ill and managed in their homes. Their rooms are turned into miniature hospital beds with IV Fluid hanging from a wall with the aid of a nail. Some people arrange for a doctor or nurse to check on the patient periodically up until the time death comes knocking.
This time; this space between being alive and waiting for death is what gives me nightmares.
In an ideal situation, I explained to my friend, her mother should be in a hospice.
When treatment for cure is not possible and the only option is palliative, a patient is said to be terminally ill. Palliative care is the care of patients with active, progressive, far-advanced disease with a limited life expectancy. It is a vital component of the basic essential services within the Universal Health Coverage as defined by the World Health Organisation (WHO). However, only six tertiary hospitals have the services at present in Nigeria.
Palliative care is best given at hospices. A Hospice care is a special kind of care that focuses on the quality of life for people and their caregivers who are experiencing an advanced, life-limiting illness. Hospice care provides compassionate care for people in the last phases of incurable disease so that they may live as fully and comfortably as possible. It is different from a nursing home for the elderly in the sense that you only go to the hospice when you are terminally ill and most times immobile. Nigerians hear ‘nursing home’ and start cursing their children. It is not like that.
Quite simply, a hospice is a facility where terminally ill people are admitted and cared for by healthcare professionals until they eventually die. Because death has no date, a terminally ill patient may be there for days, months and even years.
The hospice philosophy accepts death as the final stage of life: it affirms life, but does not try to hasten or postpone death. Hospice care treats the person and symptoms of the disease, rather than treating the disease itself. A team of professionals work together to manage symptoms so that a person’s last days may be spent with dignity and quality, surrounded by their loved ones. Hospice care is also family-centered – it includes the patient and the family in making decisions.
Despite the prescriptions of the WHO in 2002 and its reemphasis at the 2004 WHO General Assembly that palliative care should be integrated into all nations health care system, several African countries including Nigeria are yet to approve it as a policy. However, the Nigeria government in 2006 set-up a Consultative Committee on Cancer and HIV/AIDS Policy draft which incidentally our palliative care champions participated and integrated palliative care into the draft. However, a decade after the whitepaper approving, the policy is yet to see the light of the day.
This lethargy had contributed significantly to the slow level of palliative care development in Nigeria, as the palliative care practitioners have no access to the nation’s health budget. Other diseases like HIV/AIDS, COVID, Diabetes and Hypertension, fair better because of the global grants funding their medications but unfortunately the cancer and other life-limiting end-of-life-care patients have to cope with “pay for service” fees.
Its time we talked about the importance of having hospice care in Nigeria. The main goal of hospice services is to help patients be comfortable while allowing them to enjoy the last stage of life. This means that discomfort, pain, nausea, and other side effects are managed to make sure that you feel as good as possible, yet are alert enough to enjoy the people around you and make important decisions. It also significantly reduces the burden of care on informal, non-paid and under-appreciated care givers in the form of wives, daughters and distant relatives.
While researching on the topic of hospices in Nigeria, I only came across a few located in Lagos, Ibadan and Enugu. Most are privately owned and therefore frightfully expensive. It is my submission that hospice care is a vital part of healthcare and therefore needs to be funded appropriately. Whether government owned or as a private facility, the time for action is now. If we ever live to the ripe age of 70 years, chances are we will die from a terminal illness. And no one knows how long the illness will last. Or if we will be managed well. Or if our relatives can cope with the stress of feeding via tubes and changing urinary catheters.
We will all die of something, sooner or later. So why not start planning for it now? Nigeria needs hospices. So that we may die in peace.