Author– Dr. Santosh K. Chaturvedi
The role of family is very important in the causation, course, maintenance, as well as in the overall management of any medical or health condition. Family is a natural social defence. Numerous family traditions become inherent cultural defences. Thus, family and family’s activities have a protective role in a person’s life, more so when faced with stress, distress, diseases, and death. In terms of priority, in life, family is undoubtedly the most important one. Support of the family in difficult times is incomparable to any other intervention. No wonder one believes that – it’s all in the family!
What distresses family
There are a few important things that one needs to appreciate about the role of the family, especially during serious and life-threatening disease. Firstly, the family’s perception differs from the perception of the professionals. Hence, it is important that the views of the family are considered and elicited at every opportune time. For example, in a palliative care setting, a patient may be more concerned about the pain but the family may be more worried about the patient’s spiritual needs or unfinished businesses. The professional might be more concerned about the dosage of medication and any other investigations that needs to be done. Family satisfaction with care will depend on respecting their perceptions – for eventually, the patient does live with the family.
Initially, family caregivers are quite enthusiastic and energetic to look after their family member with cancer and give all their attention and compassion in the looking after process. They do not complain about the new role and its responsibility and do it to the best of their abilities. For the family, it is their duty to care for the other needy family member. Doing their duty makes them feel good and gives meaning to their life. As this care progresses the stress starts building up and the role of caregiving becomes an effort, and a burden. This leads to fatigue and being fed up with the process of caregiving. This ends with burnout, when the family caregiver, does not care for the cancer patient, and does the service without any feelings, in a mechanical and impersonal method, without any zeal or enthusiasm. The family caregivers may also develop psychiatric disorders like being stressed out, adjustment disorders, depressive or anxiety disorders.
Hospitals are considered to be places where relatives of one patient go/come to meet relatives of another one – goes a joke! The family caregivers involve other relatives or friends or volunteers to share the caregiving and even explore some respite care for their patient. Family support groups may prove to be very useful and supportive. Family caregivers can learn from each other’s experiences and share tips to manage their stressful situations. They can provide simple practical solutions which are missing from textbooks and journal articles. It is important for family caregivers to take care of their own health and well-being, in order to take appropriate care of their cancer patient. One needs to be cautious about any myths and misconceptions being shared or spread!
Listening to relatives and making them listen to you
Families can be helpful in facilitating communication in a palliative care setting. They can also create difficulties and challenges in communication. There are two types of dilemmas faced by health professionals regarding communication due to family interference – how to break bad news? and whom to inform – patient or the relatives?. The issue of informing versus not informing becomes a challenge at times, due to the unique doctor patient relationship, with both the doctor and patient expecting a paternalistic approach. Families wants to decide how much to tell, whom to tell, and many times whether to tell at all or not. We understand that it is to protect their patient from any emotional hurt or distress, but it may be at a great cost of distrust. Collusion is a big challenge in practice and dealing with it needs appropriate skills. Families, in such situations, create an atmosphere of conspiracy of silence, at home.
Interference by family
Half the problems in life are due to family, one can say. On the other hand, half the problems in life are bearable because of the family. In a traditional and developing society, the family plays a significant role in each stage of the diagnosis and management. In the Indian family scenario, a responsible family member is the decision maker, who would discuss most treatment related matters, and invariably, as mentioned above, there is collusion with the treating team. This paternalistic approach pervades throughout the medical practice and is not confined to palliative or end of life care. This practice comes in the way of an individual’s autonomy and deprives him of the benefits of health services and care. On the positive side, it defends the person from any potential maleficence, and minimizes concerns about the future for the patient. Relatives want to protect their loved ones.
Palliative care family
People like to associate with a family and easily forge family-like relationships, even in healthcare. People admitted to a hospital try to liken the staff as a member of their own family – someone is brotherly or brotherlike, sister (specially nurses), fatherly or motherly (doctors). These can be useful source of support and strength, but sometime can interfere with the care. It is important to maintain a healthy boundary between professional and personal or filial relationship. Palliative care team members can adorn the role of a family member, but it cannot replace the family relationship. Quality palliative care includes involving the family.
Mere paas ma hai
We have heard of such iconic dialogues in a movie where one of the hero brags that he has money, property, a bungalow, bank balance and jewellery and asks the other hero about what he has? The other hero responds proudly that he has his mother, meaning family. Thus, a family is way more important than any other tangible valuable in life. Family is the most valuable asset one can have. It becomes evident at times of disease and death, when the family rallies around the person, to provide emotional, psychosocial, financial, and spiritual support. Family members have a spiritual connection binding them together.
Hence, on the Global Family Day this year, let us thank our families, and support our families, value this unique relationship, and wish that the world becomes like a global village and a global family.
About the Author: Dr. Santosh K. Chaturvedi is a Medical Writer and an Author. He is currently a Consultant Psychiatrist at the Leicestershire Partnership NHS Trust, UK.
This article is a republication from IAPC website