After birth, death is the only other certainty in life. While we pay a lot of attention to the whole process of birth - starting from meticulous pregnancy checkups, choosing the best hospital for delivery (five-star labour rooms are now available at a premium), painless labour using epidural anaesthesia, even installing elaborate designer nurseries at home, to name a few - we almost completely ignore the other end of life, which is, death.
It is said that all the accumulated wealth in the world comes to no avail at the point of death. From the richest to the poorest, men will have only two wishes in their final moments: to be free from pain, and to be able to sleep peacefully.
Why are we so obsessed with the quality of birth (which, incidentally, none of us will ever remember in adulthood) but hardly bother about the quality of death?
What is Quality of Death?
Most of us can recall that one senior relative who lived a healthy and fulfilling life, completed all his duties responsibly, went to sleep after a nice dinner and never woke up – and we would say, how lucky he was to pass away peacefully. The vast majority of people, however, are not so fortunate. Unlike those who happen to die suddenly, many terminally ill patients suffer pain and a multitude of other maladies in the days before death. This is termed poor Quality of Death.
But isn’t death always unpleasant?
The point is that although death is inevitable, the pain and suffering associated with it need not be so. Even though many terminal diseases cannot be ‘cured’ in that sense of the term, much can be done to alleviate pain, anxiety and loneliness for patients in their final days.
Unfortunately, modern healthcare in India is heavily weighted towards acute care. Hospitals compete to acquire the most advanced equipments, latest surgical techniques and medical-treatment protocols, while little attention is being paid to end-of-life care. Less than 1% of the 7 million people who die every year in India have access to palliative care services.
It comes as no surprise that India, as a nation, ranks only 67th among 80 countries in a Quality of Death survey done last year. Kerala, with its superior palliative healthcare network, is considered an exception.
Dying with dignity is a deep subject indeed. On a personal level, though we can’t improve the infrastructure or alter the mindset of society, careful individual planning and forethought could help each of us reach that destination in the most comfortable manner possible.
Factors that prevent us from having a good Quality of Death
1. Lack of hospice facilities where terminally ill patients can enjoy a peaceful and serene stay in the company of their near and dear, while still receiving medical care.
2. Morphine, the universal pain-relieving medication, is not prescribed by the majority of doctors in India. Only a handful of doctors who are certified in palliative care are currently prescribing morphine.
3. The concept that all patients, no matter how terminally ill they are, must die on a ventilator in the intensive care unit (ICU) with tubes and needles inserted everywhere, is unfortunately commonplace.
4. Many people who get diagnosed with terminal illness would prefer to die in the comfort of their own home, in the company of those whom they love. (Home-based palliative care services can help minimise suffering). However, death at home is not a popular concept among those caring for the ill in India. Pressure from family members, living locally as well as abroad, frequently brings the patient back to hospital, and death eventually happens in solitude and anonymity within the closed walls of the ICU.
5. Evading the topic of death as it is deemed uncomfortable and unwelcome. Psychologists from the University of Kentucky have shown that active contemplation of death, in fact, evokes positive thoughts. One of the reasons why Bhutan is considered a happy nation, is perhaps because it is a routine practice for the Bhutanese people to calmly think about death on a daily basis.
6. Often, an older person with a chronic illness is no longer an earning member. In a family with limited financial resources, this translates into financial duress. The medical, physical, emotional and spiritual needs of such a person may not get the same level of consideration as those of a healthy and productive family member.
What can we do to improve the situation?
1. Have a contingency plan: Death spares no one, and can arrive with little warning. It is therefore wise to create a contingency plan early on, while one is still healthy and of sound mind. This will help prevent other people - often strangers - deciding what is best for us should we suddenly become incapacitated. (Family members might not be assertive at such times of crisis for various reasons.)
Although this should ideally be documented in an advanced directive, even a discussion with friends and family will suffice. These plans can include our decision to be or not to be on life support (ventilator) should we become terminally ill or suffer from an irreversible condition.
2. How would you like to be fed? Some people prefer not to be on artificial feeding (e.g., feeding tube inserted through the nose) toward the end of life, and that’s a perfectly acceptable stand. In fact, in the terminally ill, it is usual for a person to stop eating a few days before natural death happens.
3. Where would you like to die? Most patients would prefer to die at their homes. We can indicate our desire to die peacefully at home should we develop a chronic incurable illness like cancer. Studies have shown that documenting of a patient’s choice of location of dying correlated well with it happening in reality. This delicate question can be diplomatically worded as “If your condition were to deteriorate, where would you prefer to be looked after?”
4. Discuss with the family doctor: The above plans are best discussed when we are still in good health, with an experienced family physician who understands our personal views, and is familiar with our family and cultural background.
5. Discuss the topic of death with friends and family: We tend to fear what we don’t know and what we can’t see. Death is no exception to this. Open, mature discussions about death without the emotion and melodrama can, surprisingly, be quite a productive exercise. Linda Leaming, who wrote the book ‘A Field Guide to Happiness: What I Learned in Bhutan about Living, Loving and Waking Up’, says: “I realised that thinking about death doesn’t depress me. It makes me seize the moment and see things I might not ordinarily see.”
6. Invest in meaningful relationships: With increasing urbanization, emigration and shrinking family size, the traditional Indian model of younger relatives taking care of the old isn’t worth banking upon as we go forward in our years. Being genuinely nice to those around us and building meaningful friendships is not just good culture -- it might also help mitigate the inevitable loneliness we will encounter in our final days.
7. Autopilot mode for finances: Those with dependents should arrange a backup finance plan that will execute seamlessly in your absence – a crucial factor when it comes to sudden deaths. Someone you trust should be aware of your financial assets and liabilities, so that the family members are not left stranded in case you die. It has been observed that when a young earning member dies unexpectedly, the bereaved family ends up chasing banks and NBFCs for details of their accounts -- and these can be inexplicably hard to locate and access.
8. Keep some money to yourself: Many people in India lose themselves in bringing up kids -- spending their lifetime savings for their childrens’ career and, sometimes, for their extended family members. While there is nothing wrong with helping others, it is equally important to keep some money aside for our own personal use in old age. Healthcare expenses, adjusted for inflation, can be unpredictably high. Besides, there is no guarantee that the people we helped in our prime will return the favour when we are old and weak. Not having our own savings (or the means to access it) could put us at a disadvantage when it comes to the quality of care we receive around the time of our death.
9. Live well: Some people are so obsessed with accumulating wealth that they postpone the things they had dreamed to do for too long. By the time they feel ready to do it, they realise they are too ill to do so. While this is not an appeal to squander one’s earnings, spending diligently within one’s means while still in good health isn’t altogether a bad idea.
10. Donate your organs: Organ transplantation is now an accepted practice in our society, unlike 10 years ago when it was viewed with suspicion. A dead person’s organs can give extension of life to a number of patients. Those who are eager to donate their organs may declare their willingness well in advance, when they are still in good health. In the US, every time a driver’s license is issued, it will indicate whether the person is a potential organ donor or not.
11. Reserve the use of ICU for patients who actually need ICU care: Intensive-care unit does not mean end-of-life care. It is a place where lives are saved when there is potentially reversible serious illness that requires intense monitoring and treatment. Examples include a patient with heart attack or a trauma victim.
For a person who is dying from chronic illness like cancer, the ICU has little to offer except perhaps temporarily, when there is an acute setback. Such patients are better off receiving comfort care in the loving company of their near and dear. ICU care, which is not only expensive but also in limited supply, is best reserved for those with reversible conditions.
12. Recognize and treat psychological problems promptly: Anxiety, depression and adjustment disorders are common in these patients, and can make an already bad situation worse. Specific treatment can greatly improve their quality of life.
13. Avoid verbal blunders. Relatives and visitors must be counselled about what can and cannot be said in the terminally ill patient’s presence. The phrase 'first, do no harm' is worth considering here. While visiting, it is perfectly okay to ask the patient: “how are you feeling?” or engage in a cheerful reminiscing of your good times together.
However, common pessimistic phrases like “the doctors said nothing more can be done”, “how much hair you have lost!”, “how could this happen to you!”, etc., must be avoided. Energy must be instead spent in figuring out what ‘can’ be done to ease the patient’s discomfort and to preserve dignity.
14. Set clear limits: Discussing specific treatment goals and setting reasonable limits of therapeutic intervention in the terminally ill patient, with the guidance of a compassionate physician trained in palliative care, will bring on a sense of clarity and calm in an apparently dreary situation.
15. Set up a palliative care department: All hospitals must try to include pain and palliative care as part of their regular services. A community outreach programme can ensure home-based continuity of care after a terminally ill patient gets discharged from hospital after acute treatment. Such home visits will help avoid unnecessary admissions to hospital for relatively minor problems such as pain control, urinary catheter care or constipation.
16. Involve the local self government: Kerala, which leads the country in palliative care, has its panchayats providing home-based care for those with chronic illness. Trained community palliative care nurses, civilian volunteers and NGOs perform significant roles. This model can be expanded nationwide.
Is there light at the end of the tunnel – is there hope?
Consider this: In India, as recently as 50 years ago, even wealthy people who lived in expansive homes had very basic toilets, located far away from the main house. At that time, they reasoned that the activity in the toilet was ‘dirty’ and therefore, bathrooms did not merit any attention. Later, people figured out that since the toilet was an unavoidable part of the daily routine, it made perfect sense to build luxurious toilets, to a point that the bathroom is the most beautiful room in some contemporary homes.
By the same token, at this point in time - 2016 - death may be seen as an unwelcome and ‘dirty’ part of one’s life, and no effort is being made to make it beautiful. Maybe, just maybe – perhaps 50 years later - people will have figured out that death is the event that actually needs the most attention in a person’s life, and bring it to the mainstream. Some developed countries are already doing that. All it needs is a change of mindset. There is hope.
How to become an organ donor in Kerala.
(The author is a senior consultant gastroenterologist and deputy medical director, Sunrise group of hospitals)