End-of-Life Choices: A Defining Moment

By Dr Olinda Timms –

At a recent seminar with philosophers at Pune University on the topic ‘Ethics of Clinical Disputes in Terminally Ill Patients’, complex and problematic hospital scenarios were described, when doctors struggle to determine the patient’s best interest. A key learning that emerged was the significance of non-clinical life decisions; choices of the patient and family that profoundly impact end-of-life situations.

Talking about death is never easy, and in our culture it is even deemed to be inauspicious. Although death is accepted as inevitable, the modalities and preferences around dying are difficult subjects, complicated by emotion and denial. Today, more than ever before, advances in medical science and technology can prolong life and postpone death, and while this is laudable in terms of medical possibilities, the individual experience may be far from ideal. Some medical interventions used to prolong life can be traumatic, devastatingly expensive and even result in harm. This is why we need to get comfortable about discussing death and expressing our choices linked to the dying experience.

To begin with, one may have to reflect and seek answers to philosophical questions about our human existence:

What does it mean to be alive?

Patients in an unconscious state can be kept alive on ventilators. Persons can be immobilized by quadriplegia, or incapacitated by advanced Alzheimer’s disease or dementia. This challenges our very understanding of being alive.

 Is ‘quality’ of life important to us?

‘Quality of life’ is the general wellbeing of individuals linked to satisfaction with life including health, education employment, wealth, religious beliefs, family, relationships, freedoms and the environment. It can be different for different persons in different situation and changes with time. Is being alive enough, or does some pre-determined quality of life matter, in clinical decisions at the end of life?

 How do we respond when the doctor says that further medical treatment would be futile?

A medical intervention is futile when it is ineffective, or without purpose. Medical futility is a situation when the clinical treatment does not achieve the goals of care for a particular patient. Doctors are not obligated to provide treatment that is futile, particularly in view of limited resources, but are expected to continue with comfort care of the patient until the end.

In end-of-life situations, goals of care are determined not only by the medical options available, but by the wishes of the patient. Respect for the patient autonomy by allowing the patient to take decisions based on information and personal choices is an ethical imperative, and medical care today is less paternalistic and more consultative, subject to consent and will of the patient. Goals of terminal care could include restoration of function, relief of pain, prolonging life or simple palliation. The doctor and patient, along with the family, may mutually decide goals of care in terminal situations.

Are we ready to face death? What is a ‘good death’?

A study by medical journal JAMA ranked the key issues that contribute to a ‘good death’ as follows:

• Freedom from pain
• At peace with God
• Presence of family
• Mentally aware
• Treatment choice respected
• Finances in order
• Feeling that life is meaningful
• Resolve conflicts
• Die at home

The study reported that most patients close to death valued spirituality, the importance of prayer and being ‘at peace with God’.

Many of us have experiences with elderly relatives who are ready to die and do not want either hospitalization or ICU care. Some view bed-confined patients, those with Alzheimer’s and progressive neurological disorders with dismay, praying they will not meet the same fate. Just as it is meaningful to consider how we wish to live, it is equally important to think consciously about dying.

While death is a moment in time, dying may be longer and more complex than we anticipate. The experiences of others can prepare us to think through our choices, discuss with family and then communicate with doctors and our near ones. We need to create spaces in our homes and our community to have these difficult conversations and share our wishes and fears. In our country, ‘Do Not Resuscitate’ orders and ‘Advance Directives’ are yet to find legal acceptance. However, it is good to record our preferences and let others know, in case we are unconscious or incapacitated, and decisions have to be taken by the family.

In some cases, one may need to appoint a friend who will take health decisions on our behalf, in case of need. When the patient’s wishes are unclear, surrogate decision makers, like children of dying parents, can sometimes disagree about what is to be done, leaving it to the doctor to decide. Often it is social reasons or fear of abandonment that make families insist on ‘doing everything’ for the patient. These situations are far from ideal, and unnecessary expensive, aggressive treatment can be avoided if patient’s wishes are known and communicated.

Another area of concern is truth telling. The family may ask the doctor not to share the diagnosis or poor prognosis with the patient, as they feel it will emotionally harm the patient and impede recovery. This form of collusion, though justified in some cases, is ethically problematic as the doctor has a duty primarily to the patient and must respect the right to know and make conscious choices about further care. Terminally ill patients may want to prepare for death, both spiritually and pragmatically, coming to terms with their mortality and setting their finances and relationships in order. Doctors have to weigh the benefits and harm to the patient in each case, and counsel the family if the truth is unreasonably withheld.

The question of organ donation may arise in terminal care, particularly with unconscious patients and accident victims. The family is in a dilemma whether to donate or not, wishing to respect bodily integrity of the patient. If every person takes this decision well ahead of time, informs the family and carries a donor card, this ethical dilemma can be resolved, and many sick patients can receive a fresh lease of life from this act of generosity.

Our beliefs about human life created in the image of God, as an invaluable gift with a purpose and destiny, worthy of respect, shapes not only the way we live but also our view about death. Faith in God and belief in the afterlife presents a different perspective of death. Understanding the patient’s beliefs and allowing reconciliation and prayer is an essential part of terminal care. The doctors own beliefs and convictions could also impact how end-of-life situations are managed. As professionals, doctors are expected to adhere to well defined protocols of care and prioritize the interest and wishes of the patient as far as possible in this area.

In the present context of medical care, we cannot afford to be complacent or diffident about end-of-life choices. At least out of concern for our family who may be left to agonize over these decisions, we have to begin this conversation about death and dying and encourage our communities to confront this discourse. It can result in better outcomes of care, ameliorate dilemmas in ICU, Emergency rooms and oncology units and assist doctors in determining the course of action that would be in the best interest of the patient.

---

Dr Olinda Timms is Head, Bioethics Unit (International Network of the UNESCO Chair in Bioethics), St John’s Research Unit, Bangalore & Adjunct Faculty, Department of Health and Humanities, St Johns Research Institute, Bangalore. Dr Timms is also the author of the book, “Biomedical Ethics”, brought out by Elsevier Publications.