Dear Lord, why me? God on the firing line of heart patients

Kenyans living with advanced heart failure feel they have the condition because they have wronged God or have been bewitched.

Others feel they have the condition because God has betrayed them, a study shows.

The research, Spiritual Issues of People Living and Dying with Advanced Heart Failure in Kenya, showed that in finding meaning of the heart failure, patients may rely on their spirituality to make sense of their experience.

Heart failure is the inability of the heart to keep up with the demands on it, thus fails to pump blood with normal efficiency to organs such as the brain, liver and kidneys.

“In the absence of information on the illness, these feelings of guilt and disappointment exacerbated their distress,” the study led by PhD student at the School of Public Health, University of Nairobi, Dr Kellen Kimani, says.

These feelings of guilt and disappointment heightened in patients whose condition deteriorated.

Younger heart failure patients experienced greater distress as they felt their illness had limited their ability to work and provide for their families.

The paper, published in the British Medical Journal, argues that as a result, patients’ beliefs may mask underlying anxiety which may trigger multidimensional distress and lead to poorer health outcomes. As a result, this may lead to demand for health services in turn, plunge households into worsening poverty.

The research is based on interviews — conducted at zero, three and six months after recruitment — with 18 patients (10 women and 8 men) who were admitted with advanced heart failure in a rural district hospital in Central Kenya. The patients were aged between  19 and 75 years.

One of the patients, identified as a 57-year-old woman, said: “What have I done against you God? Haven’t I lived my life as you expect me to? I have pressure’ ‘sugar’ (diabetes), kidney and heart problems.

“Why should I be the only one to have these problems? Even after asking this, there is no answer. These illnesses are more than I can handle.”

Spiritual distress was significant at diagnosis, during periods of acute deterioration, and in the last days of life.

CHURCH’S ROLE

Patients rarely spoke about death as they felt that this was under God’s authority to make meaning of their experience.

Such positive spiritual responses have been associated with better health outcomes as patients experience fewer symptoms of depression, enhanced quality of life and better health practices such as improved adherence to treatment.

Although this helped patients to cope, it at times contributed to their suffering as they struggled to reconcile their experience with a belief in a benevolent God. The church offered comfort for some but was also a source of distress.

For instance, although church fellowship generally offered spiritual and social support, some patients felt let down by the church, which they perceived to favour those who offered more tithes.

On this, a 35-year-old patient said:  “Nowadays the church is not helpful. If you don’t offer tithe as expected, no one will know you. You see, I don’t tithe all the time because I don’t have money.

“I noticed that when someone tithes more, they plan to visit them. But I’ve been admitted here for almost a month and no one has prayed for me. There is a lot of discrimination.”

The research offers insight of cardiovascular disease, which is one of the many non-communicable diseases burgeoning the continent and the country.

FATTY DIETS

It recommends understanding patients’ spiritual concerns to develop evidence-based patient-centred holistic care to promote multidimensional well-being.

This study on spirituality and heart failure in Kenya is part to a bigger PhD research project in collaboration with Dr Liz Grant and Prof Scott Murray — both of the University of Edinburgh.

 It seeks to understand the patients’ experiences of living with heart failure in Kenya so as to inform health policy and services in the country.

Cardiovascular conditions such as heart attacks are the number one cause of death in adults in Kenya. However, the trend is shifting as more young people are being diagnosed with heart conditions.

This is attributed to the growing incomes which have contributed to sedentary lifestyles and fatty diets that have triggered a rise in obesity and high blood pressure, which are major causes of heart attacks.

THE BAD SIGNS...

• Shortness of breath (dyspnea)

• Asthma due to the heart (cardiac asthma)

• Pooling of blood (stasis) in the general body (systemic) circulation or in the liver’s (portal) circulation

• Swelling (edema),

• Blueness or duskiness (cyanosis),

• Enlargement (hypertrophy) of the heart.

... AND THEIR CAUSES

•  Coronary artery disease leading to heart attacks and heart muscle weakness,

•  Primary heart muscle weakness from viral infections or toxins such as prolonged alcohol exposure

•  Heart valve disease causing heart muscle weakness due to too much leaking of blood or heart muscle stiffness from a blocked valve

•  Hypertension (high blood pressure).

•  Rarer causes include high thyroid hormone, vitamin deficiency, among others.

***

The significance of patients’ spiritual care

Dr Kellen Kimani, a doctor and PhD researcher in Global Health at University of Edinburgh, UK and at University of Nairobi, spoke to HealthyNation.

What are the implications of your study to Kenya’s heath care system? What does it tell us about the future?

By 2030, non-communicable diseases including heart failure will be the leading cause of death in Sub-Saharan Africa,  overtaking infectious diseases and maternal and child health conditions (source: World Health Organisation - Global Burden of Diseases).

The results of our study reveal that people with advanced heart failure suffer from significant physical, psycho-social and spiritual distress through the course of their illness.

As disease patterns change in Kenya, it is important that services are coordinated to meet patients’ changing needs including spiritual issues that people have - asking themselves questions about the meaning and purpose of life and “where is God in all this” are often very important to people with life-threatening illnesses.

Given the lack of information on the part of the patients to understand their condition, what is the role of the family and to a large extent the church/religious institutions in offering support to heart failure patients?

The results of our study showed that patients value the spiritual, emotional and financial support offered by family members and religious institutions which helps them cope with their illness. However, patients feel abandoned when this support is not forthcoming and this adds onto the psychological distress and their suffering. It is important to be aware of how social networks may influence how patients experience illness. Family members and religious institutions should make time to listen to sick people and help them get their questions answered as well. We need more research to understand patients’ sources of information and what role family and religious institutions play in providing information.

Given that some health care workers do not understand the role of spirituality on health outcomes, is there a need for training on this, to create awareness among these professionals?

Yes, there is need for training health professionals to be aware of the multidimensional needs of patients and that patients’ needs go beyond their physical symptoms.  Nurses and doctors also need time to listen, explain and support patients and their families.

Training could be delivered by partnerships between health service providers and faith communities.  There are great examples  in many other countries such as Uganda and South Africa. The Christian Health Association of Kenya has also been active in developing training resources.

Would you know about the cost implications of understanding patients’ spiritual concerns to develop evidence-based patient-centred holistic care to promote multidimensional well-being?

This would require further research to explore the cost of holistic approaches to multidimensional care. However, we do know from similar studies conducted in Scotland that not listening to and meeting the spiritual needs of patients can actually increase costs to the health services as these needs become great and patients become more distressed.

Kenya would be in an excellent place to develop this further study and to provide evidence on the ways in which faith and health care can support each other.  This is a topic that is of huge significance to the World Bank at present.  Helping people spiritually will almost certainly help reduce how they suffer, and give them peace to cope better with their illness, and fear dying less.

How is the prevalence of heart failure nationally?

Over the past 15 years, published data on heart failure in Sub-Saharan accounts for nine to 15 per cent of hospital admissions.

In Kenya, more work is under way to determine the burden of heart failure in our population.