End-of-Life Care and Psychiatry: Current Trends and Future Directions in India

Introduction

Death is an inevitable part of life’s journey, be it a natural event at the end of one’s lifespan, an event at the end of an advanced or progressive, chronic, serious, life-limiting illness, or a sudden event in the course of an acute medical illness, irreversible despite intensive interventions. Health-care providers, therefore, should focus on curative and life-saving services as well as palliative care and end-of-life care (EOLC) of patients with advanced, prolonged, serious, life-limiting illnesses (Gaertner et al., 2012[12]; Dzingina and Higginson, 2015[10]).

Authors have discussed the need for goals of management and care preferences in EOLC (Mack et al., 2010[27]). EOLC involves good communication, clinical decision-making, liaison with medical teams and families, comprehensive assessment of and specialized interventions for physical, psychological, spiritual, and social needs of patients and their caregivers. Hence, the discipline of psychiatry has a significant role to play in EOLC. However, there is less awareness and knowledge, both among health-care professionals, including physicians and psychiatrists, about EOLC and controversies abound, especially in relation to foregoing of life support treatments and euthanasia (Gibbins et al., 2011[13]).

This article aims to give an overview of EOLC, current trends, role of psychiatry in this field and future directions, with an emphasis on the Indian context.

Need to Talk about End-of-Life Care in India

According to the World Health Organization Global Statistics 2012, 63% of the estimated 57 million deaths globally in 2008 resulted from noncommunicable diseases. Eighty percent of these were in low- and middle-income countries (WHO, 2012[52]). In 2011, an estimated 20.4 million people worldwide needed palliative care at the end of life (Macaden et al., 2014[25]). The common serious illnesses were cardiovascular diseases (38.5%), cancer (34%), chronic pulmonary diseases (10.3%), human immunodeficiency virus related (5.7%), and diabetes (4.5%). Approximately 53% of deaths in India are due to noncommunicable diseases, mainly cardiovascular and chronic respiratory cancer and diabetes (Sharma, 2013[42]). In India, 1 million new cancers are diagnosed each year, two-thirds presenting in incurable stages.

There is a projected increase in the elderly population globally, mainly in the developing nations. India is referred to as the “aging nation,” with 7.7% of its population being over 60 years of age and a projected increase to 324 million by 2050 (Ingle and Nath, 2008[15]). This rise will lead to a greater health-related burden. A study in India has reported that most patients would prefer to die at home (Kulkarni et al., 2014[20]). However, most patients with advanced, progressive, life-limiting illnesses in terminal stages get transferred to hospitals and Intensive Care Units for acute, medically life prolonging, or supporting interventions. They later die in the hospital in an environment away from loved ones. Due to lack of clear guidelines for physicians on EOLC, patients are subjected to futile treatments, often expensive, pushing the families into grave economic crises. Relatives, therefore, are often forced to take the patients home on leave against medical advice (Mani, 2003[28]).

The Economic Intelligence Unit report, funded by the Lien Foundation, stated that out of 40 OECD countries, India figured as the worst (40^th rank) place to die (Macaden, 2011[26]). In the recently released report on the Quality of Death Index 2015, India has ranked 67^th out of 80 countries included[50].

Misconceptions exist among health-care providers about EOLC, with misrepresentations of EOLC as euthanasia, resulting in controversies. It is, therefore, necessary to have a clear understanding of various aspects of EOLC in India and future directions that need to be taken.

End-of-Life Care: General Concepts

The concept that palliative care begins when all treatment modalities fail is outmoded. The current concept of palliative care is that its scope lies across the disease trajectory, integrating it with disease-specific treatment, focusing on comprehensive interdisciplinary care for the patients and their families. EOLC lies on a continuum with active disease modifying treatment, palliative care, and supportive care. This continuum ensures that patients and their families are cared for during the end-of-life and dying process, after the death of the patients and during the bereavement period (Luckett et al., 2014[23]).

EOLC can be defined as holistic care of people with advanced/progressive/incurable, life-limiting illnesses, with the help of a multidisciplinary team, to enable these patients to live their lives as well as they can before death. This total care approach includes care of the caregivers as well (Macaden et al., 2014[25]).

The objectives of good EOLC are:

1. To ensure that each patient achieves “good death,” irrespective of type and duration of disease and place of death

2. To focus on quality of life as well as that of death

3. To acknowledge that each person is entitled to a peaceful and dignified death, with freedom from pain and suffering; right to palliative care is a human right.

Principles of “Good Death”

According to the principles of good death (Smith, 2000[48]), the dying person should:

• Be able to know that death is near, to understand what happens at this time

• Have control of pain and other symptoms

• Maintain dignity and privacy

• Be able to decide the desired place of death

• Be able to access specialist care and emotional/spiritual support

• Be able to get admitted to hospice services

• Have control over who is present at the time of death, to be able to say farewell

• Have choice of making advance directives so that the patient’s wishes are followed

• Be able to leave the world and not have unnecessary prolonging of life.

Steps in End-of-Life Care

For initiating and implementing good EOLC, certain steps are recommended (Chapman and Ellershaw, 2011[6]). These are as follows:

Ethical principles in End-of-Life Care

The four pillars of bio-medical ethics are autonomy, beneficence, nonmalfeasance, and justice (Beauchamp and Childress, 2009)[2]. Justice, however, in EOLC, is mainly social justice (elaborated below). All these principles are integrally connected and interdependent though, for the sake of our understanding, we may separate them into different categories. In relation to EOLC (Shreves and Marcolini, 2014[45]), these four can be briefly described as follows:

Concept of Futility

Medical futility is difficult to define (McCabe and Storm, 2008[29]) as reflected in the differences of the definition given by various professional associations. The descriptions include “no reasonable chance of benefiting the patient,” “highly unlikely to result in meaningful survival,” and “the physician must be certain that the intervention will fail to accomplish its intended goal.” Medical futility can be quantitative, qualitative, physiologic, lethal condition and imminent demise futility (Myatra et al., 2014[32]).

A small elaboration may be useful here. The goal of treatment in any situation should be to improve survival or quality of life. Risk–benefit assessment should include physical as well as psychological impact and effect on economic condition of the patient. If a treatment does not adhere to the above and is judged to be “futile,” considering the irreversible nature of the medical condition, administration of such an intervention is likely to cause more harm. Coming to an agreement about futility of treatment helps in initiating the communication regarding the need for EOLC. Hence, understanding perceived futility plays a significant role.

Advance Directives and Advance Care Planning

Role of Psychiatry in End-of-Life Care

In view of the issues discussed above in and around EOLC, the role of psychiatry in EOLC is full of possibilities. The phenomenal research on death, grief, and bereavement was pioneered by Elizabeth Kubler-Ross, a Swiss American psychiatrist, published in her world famous treatise “On Death and Dying”[18,19].

Communication skills are an integral part of patient and caregiver–physician discussion in EOLC (Quenot et al., 2012[37]). The psychiatrist can meaningfully contribute to development, training, and implementation of communication interventions for this purpose. The psychiatrist, with in-depth understanding of living with a life-limiting condition, can evaluate psychological issues common to these patients and their caregivers such as hopelessness, demoralization, and anticipatory grief, especially in terminal and end-of-life phase. He/she can make a comprehensive assessment of the psychosocial and spiritual issues and the impact of physical problems and medical interventions on the mental health of the patient in end of life. He/she can distinguish between distress and clinically significant depressive and anxiety disorders and delirium, commonly seen in terminal illness and EOLC (Chochinov, 2000[7]).

The psychiatrist, by his/her expert ability to liaise and communicate with the primary team, palliative-care professionals, and the caregivers, can effectively add to relevant, occasionally difficult and complex end of life decision-making process. The psychiatrist can add to capacity evaluations, aiding in management plans made by the primary team in EOLC. He/she understands family dynamics and systems, which make him/her an invaluable member of the palliative-care team working with the caregivers.

The association between spirituality and mental health has been documented (Sharma et al., 2009[43]). By virtue of training, the psychiatrist can understand spiritual and existential issues of both patients and their caregivers and address spiritual pain and suffering in EOLC. Psychiatrists working in the field of oncology and palliative care have developed advanced psychotherapies, addressing emotional, psychosocial, and spiritual issues, which are of benefit in terminal illness (Chochinov et al., 2005[8]; Breitbart et al., 2010[4]).

Complex psychopharmacological interventions may be required near the end of life for management of symptoms of depression, delirium, and anxiety. The psychiatrist can thus bring about relief of pain and suffering by appropriate symptom management.

Psychiatry has major part in identifying anticipatory grief and applying relevant interventions for bereavement work. Kissane et al., well known for working in psycho-oncology and palliative care, have developed “Family Focused Grief Therapy,” a well-established, evidence-based psychotherapeutic intervention useful in certain dysfunctional families with patients approaching end of life (Kissane et al., 2006[17]).

The psychiatrist’s skills in decision-making and knowledge about ethical principles make his/her position as a significant contributor in EOLC. He/she can recognize and manage stress in staff working with patients in their end of life and also in their caregivers.

Psychiatry, Dementia, and End-of-Life Care

Palliative and EOLC are important in people with dementia, broad issues being symptom management, care provision, place of care, dignity in person-centered care, and training (van Soest-Poortvliet et al., 2015[51]). The psychiatrist has a key role to play in EOLC for patients with dementia by addressing the concerns and providing emotional support to their caregivers. A thoughtful editorial in the British Journal of Psychiatry has emphasized the standing importance of EOLC in patients with dementia and the need to better the same (Sampson et al., 2011[39]).

The median survival in patients with dementia is about 4.1 years and in those with advanced dementia is 1.3 years (Sampson et al., 2011[39]). These patients have severe problems with pain, dyspnea, feeding difficulties, risk of infection and aspiration, and pressure sores. The symptom burden in dementia patients is comparable to those of terminal cancer patients. The family members have a high caregiver burden and need support for emotional distress.

Other issues include capacity evaluations, inappropriately aggressive investigations or hospitalizations, and placement for care. Good person-centered care is crucial at the EOLC in advanced dementia. Although there are nursing or residential homes for regular and respite care of the elderly with dementia in the developed nations, there are still difficulties about adequately trained staff, less use of advance care planning, and poor quality of care (Lawrence et al., 2011[22]). van Soest-Poortvliet et al. 2015, in their prospective study on comfort goal of care and outcomes in dementia patients in end of life, have noted that family’s satisfaction with care received by the patient is an important factor[51].

The standardized guidelines have incorporated palliative and EOLC in the algorithm of management (National Institute for Health and Clinical Excellence 2006)[34]. Patients with dementia also deserve good quality EOLC to achieve a good death with freedom from pain and other distressing symptoms, breathing their last in the midst of family and loved ones, affirming the whole person. There is, thus, an overwhelming role of the psychiatrist to be working in this area, for developing guidelines, training professionals involved in dementia, and providing suitable services for addressing EOLC needs in this vulnerable population. Psychiatry has a prime responsibility in this field.

In the case of psychiatry in India, Shaji (2009)[41] has outlined the principle of incorporation of palliative care in addressing need-based interventions of patients with dementia and has stated the objectives as part of the 10/66 Dementia Research Group’s India Network.

International Perspectives in End-of-Life Care

Service, education, and research in palliative and EOLC are well ensconced in health-care models in the United States of America, Canada, the United Kingdom, and most other countries in Europe and Australia, with established standards and care pathways (Singer and Bowman, 2002[46]). There are different service delivery models including home-based services and hospices facilitating EOLC. There are clear-cut procedures for advance directives, advance care planning, and guiding principles for withdrawing and withholding life-support measures. Although there are debates about legality of euthanasia, there exists a clear separation of the concept of euthanasia from EOLC. Recommendations for best practice have been reviewed, the broad themes in EOLC being symptom control, relational and social aspects, preparation for death, existential issues, quality of life, end of life decision-making, and dignity (Barazzetti et al., 2010[1]). A systematic review has advocated validated measures for use in research (Luta et al., 2015[24]).

Current Issues in End-of-Life Care in India

In India, in contrast to the western world, “paternalism” still tends to outweigh “patient autonomy.” The physician is thought to be the sole decision-maker, and patients and families are often compliant with this situation. Patient choices, family collaborations, and discussions about end of life care are fraught with difficulties in EOLC (Macaden et al., 2014[25]).

Health service delivery is based mainly on an acute model of care. Although palliative care has made inroads into health care in certain parts of the country, the awareness of EOLC is quite poor.

Patients and families have unrealistic expectations and hope for a cure, for which they spend on “futile” treatments which are expensive, with minimal chance for a good outcome. Physicians are also reluctant to stop active, or limit, life-support interventions due to lack of clear guidelines in this area. Myatra et al. found in their study in Mumbai that foregoing life-support interventions was greater in public hospitals as compared to private hospitals (Myatra et al., 2010[31]).

Legal Scenario Regarding End-of-Life Care Issues in India

In India, the right to consent to or refuse treatment is recognized by law. Although in an earlier case, law allowed the right to die when in a situation of excruciating suffering, the Indian Supreme Court later overturned this. These cases, however, related to suicide and attempted suicide and not to EOLC (Macaden et al., 2014[25]). What does this mean and what does it imply? The law has been used to interpret all decisions relating to life support interventions as suicide and not as end of life care. This creates a barrier for professionals wanting to initiate appropriate management options in the end of life.

Euthanasia is defined as administering a lethal drug by a doctor to the patient at the latter’s request to bring an end to his/her suffering. The Law Commission of India has made a definite distinction between euthanasia and end of life decision about foregoing life support interventions. The decision could be made by the patient having the capacity to make this decision but not by the family on behalf of the patient (Myatra et al., 2014[32]).

In the Aruna Shanbaug case in India, the judgment stated that “involuntary passive euthanasia” was legal but subjected to strict procedures and safety measures (Chakravarty and Kapoor, 2012[5]). However, the term “involuntary passive euthanasia” is not in accordance with the current medical terminology. Withholding and withdrawing life support interventions could be considered in certain situations, as per the ruling. Application of these guiding principles is feasible in persistent vegetative states (Macaden et al., 2014[25]). However, ambiguities remain following this judgment. Issues around critical care settings concerning initiation, discussion, and process of EOLC with all its integral components necessary to achieve a good death for the dying patient are still being debated.

A consensus position statement by the Indian Association of Palliative Care (IAPC) has been published on a policy on end of life care (Macaden et al., 2014[25]). The Indian Society of Critical Care Medicine (ISCCM) and the IAPC have published guidelines and recommendations for an integrated plan for the dying (Myatra et al., 2014[32]).

The guidelines comprise an effective and comprehensive pathway for the assessment, communication, decision-making, and process in EOLC. There are recommendations about physicians’ assessment of dying process, consensus or agreement among care providers, sensitive communication with family and discussion about EOLC, concept of shared decision-making, appropriate and relevant documentation about the process and decisions, maintaining consistency among family caregivers, instituting the EOLC process throughout the dying process, after death and bereavement period, with ongoing review.

The current legal scenario is that “Common Cause,” a nongovernmental organization, has filed a petition for the right to die with dignity to be recognized as a fundamental right along with provisions for “Living Will and Power of Attorney.” A five-judge committee has been formed by the Chief Justice of India to address problems and questions around euthanasia and dignity in death. An impleadment appeal has been filed by the ISCCM in response to the writ petition (Myatra et al., 2014[32]).

Future Directions and Responsibility of Psychiatry in End-of-Life Care in India

There is an overwhelming need for awareness in India, among health-care professionals and public alike, on EOLC. A study conducted in Northern India reported that physicians had less knowledge about EOLC issues in terminally ill elderly cancer patients (Gupta et al., 2007[14]). To facilitate the movement and service provision, a policy on EOLC should be formulated for implementation. The different stakeholders have to bring it to the forefront of healthcare issues in the country. Palliative and EOLC services have to be set up, incorporated, and provided by hospitals, community clinics, and home-based services throughout the country. Although some Indian states such as Kerala do have a mandate on palliative care and these services are existent, in other states, barriers are being faced in implementation despite having a policy (Kumar, 2013[21]).

Service provision implies a role of training in palliative and EOLC. The ISCCM and IAPC have arranged educational programmes for medical and nursing professionals through different centers in India around World Hospice and Palliative Care Day on October 11. Such systems must be in place as part of round the year curriculum in hospitals, organizations, and associations.

In this context, psychiatrists, by virtue of their knowledge, skills, and competence, have a great role to play in EOLC. They have to apply their skills in EOLC for patients with both chronic, serious, advanced/progressive, life-limiting diseases as well as those with severe, persistent, mental illnesses including dementia.

Various authors have discussed education of psychiatry trainees in palliative and EOLC (Fairman and Irwin, 2013[11]). Palliative care psychiatry, end of life care and end of life decision making need to figure in the curriculum of postgraduate education as well as continuing professional development in psychiatry. Advance directives have been introduced in the draft Mental Health Care Bill, making it the duty of all psychiatrists to be experts in advice, application, and implementation of these concepts to their patients, which could be a valuable measure in end of life care (Sarin, 2012[40]).

End of life care in dementia is a major area for psychiatrists to be involved in. Patients with severe mental illnesses are more at risk for developing serious physical illnesses, which can shorten their life span. Physicians have a duty to look after these patients throughout their illness trajectory. It is their ethos to maintain dignity in life and ensure dignity in death for all their patients. The role of psychiatry in end of life care is a significant one and can be a rewarding experience. Psychiatrists should make all efforts to get involved in the discussion around end of life care to ensure proper guidelines, procedures, service, and legal provisions which are put in place in India and be at par with international standards [Figure 1].

Concluding Remarks

Patients who have a chronic, serious, advanced or progressive, life-limiting illness need, in their terminal phase, comprehensive, compassionate care for freedom from pain and symptoms, psychological, social, existential, and spiritual distress, so as to achieve a “dignified exit” or “good death.” There is inadequate service provision and awareness about end of life care in India. Good end of life care ensures patients can have dignity in death as in life, and caregivers receive the support they need. Psychiatry has a significant part to play in this process, which can be both learning and rewarding experience for the psychiatrist working in end of life care in all the aspects of clinical services, education, training, and research.

Take Home Message

1. Understanding of concepts, practice, and education of EOLC are essential for psychiatrists.

2. The psychiatrist has a major role to play in the area of EOLC in patients with both chronic, serious, life-limiting physical diseases as well as severe, persistent, mental illnesses.

3. A lot has to be done to improve EOLC facilities in India.

Questions that this paper raises

1. What is the impact of inclusion of a liaison psychiatrist in the Intensive Care Unit team?

2. What are the psychiatric interventions of benefit for patients in end-of-life care in India?

3. What are the barriers to inclusion of a psychiatrist in end-of-life care services in India?

4. Is there a change in the belief systems of the caregivers when patients are in their end of life?

5. What is the effect of culture on bereavement interventions?

About the Author

Jayita Deodhar MD (Psych), DPM, DNB (Psych), MRCPsych, is a Consultant Psychiatrist and Associate Professor, working full time in psycho-oncology for the last 10 years at Tata Memorial Centre, Mumbai, India. She has an active interest in psychodynamic psychotherapy and cognitive-behavioral therapy. She is interested in research in psycho-oncology and palliative care psychiatry. She has been the Country Coordinator for the International Psycho-Oncology Society’s Special Psychosocial Academy held for the first time in India, which she organized in November 2013 at Tata Memorial Hospital in Mumbai. She is Editor, Archives of Indian Psychiatry (official publication of the Indian Psychiatric Society – Western Zonal Branch). She serves on the Education Committee of the International Psycho-Oncology Society.