life limiting illness

The road on which a person and his / her family, diagnosed with a life limiting illness and approaching the inevitable end of death, passes through is laid with multiple rough patches and the journey is often a challenging one. The care providers’ primary role is – as much as possible, to smoothen out the rough patches, and accompany and journey alongside much beyond the inevitable end, till such a time that the family is able to stand without this support.

A care giver, whether professional non related care giver or family member, in this journey of accompaniment, will need to hold multiple roles and responsibilities, and switch these, on a dynamic basis, as the disease progresses and needs and contexts undergo various changes.

The primary role of the care provider will be one of being a “Communicator”. From the time of diagnosis, and into months after the demise of the person, this role of being an effective but compassionate communicator remains the role which will bring hope in the midst of a seemingly hopeless situation and comfort in the context of distressing events.

Communicating the diagnosis, the potential progression and the inevitable end, succinctly but with sensitivity and compassion, to the patient , close relatives, and the rest of the family, is a difficult challenge which has to be taken up early in the course of the journey. On-going supportive verbal and more often nonverbal presence is what could facilitate the individual and close relatives to move from denial to acceptance, anger to peace and helplessness to hope. Equal or more time will need to be spend with the close relative or spouse, whose emotional upheaval might be more than that of the patient. If the disease is one which affects the cognitive functions, the communication becomes much more complex, and many a times challenging and stressful to the care provider. The content of the communication will go through constant evolution, as the disease progresses and patient goes through various exacerbation and remissions.

Preparing for the disease progression and inevitable end, anticipating and planning for potential crises or rough patches, need to be part of the care planning from the initial days itself. If the disease is a slow progressive one this preparing and planning becomes easier initially but at the same time more complex as the days prolong; the challenge being, keeping up hope when the way ahead is uncertain and long. Such on-going support is inevitable in slow and prolonging disease situations.

Setting up systems for care, support and treatment is yet another key role of the care provider. This will involve setting up systems of medical, emotional, social, financial and spiritual care, both for the individual and the family. Setting up these systems will involve facilitating a community of caring people, who can contribute to these needs, coming alongside the patient and the loved ones. This will also include having conversations which we are generally not comfortable with, or tend to avoid. Conversations around death, funeral, life after loved ones death, issues like preparing a living will, sorting out financial, legacy and succession issues, might be inevitable.

Treatment plans should primarily focus on making life as comfortable as possible, in the midst of the progressing life limiting illness. The balance between palliative or curative treatment modalities, or palliation which could worsen the quality of life or hasten progression Vs just enough palliation to make the patient comfortable, is difficult but definite decisions will have to be taken. As the days draw close to the end, facilitating the family to come together and prepare to support each other and enjoy their loved ones potentially short presence becomes a role the care provider has to take up.

At every stage there will be ethical dilemmas the care giver will face.

Individual autonomy Vs families’ and close relatives’ desires and needs, individual confidentiality vs shared confidentiality, what and what not to communicate, are challenges one would face.

If the illness is one which affect the cognitive functions, then the autonomy and communication issues become more challenging.

Not to do harm in the midst of balancing issues like prolonging life vs facilitating peaceful death, treatment decisions which could hasten progression or reduce quality of life or interventions which could un-necessarily prolong suffering, are other challenges one would need to grapple with.

Beneficence of the individual vs family will be yet another constant issue one will have to consider and balance. The issues of justice will emerge as treatment decisions are considered.

Some guiding principles to help the care giver to grapple with these challenges are

· Recognizing that the individual autonomy is in the context of the desires of a loving and caring family and community who want the best for the individual.

· Holding on to the fact of God as the Giver and Taker of life, and the patient and all involved as His creation carrying His image.

· Understanding care providers’ role as a facilitator of a hope and comfort giving journey, using his or skills and available resources.