Giving patients the right to a peaceful death
By: Story KARNJARIYA SUKRUNG
Bangkok Post Newspaper section: Outlook 30/06/2009
Ten-year-old Pongpol Boonyabhum had been living with leukemia since he was 6. When his condition progressed to the final stages, with support from his mother, he decided to embrace death.
Taking a palliative care approach, the boy took medicine and received treatment to relieve his pain and was put on oxygen to help with breathing difficulties so he could maintain a quality of life like that of a regular boy.
He chose to stay at home with his mother, play computer games, see his friends and enjoy his favourite foods. He refused to spend his last hours in an intensive care unit or resort to medical equipment to resuscitate life.
“It was already a miracle that he had managed to live for four years since being diagnosed with cancer,” said Rangsima. “So we refused to negotiate with death anymore.”
A day before his death, the boy asked to go to Samila beach near their home in Songkhla province, a place which he had enjoyed going to in the past. On their trip home, he rested his head over his mother’s shoulder. “I am so happy, mum,” he said.
“I am too, son,” she replied, smiling back at her only child.
That night, he began throwing up blood, and Rangsima rushed him to hospital. Test results suggested his insides were bleeding and the end was near.
“Am I dying, mum?” Pongpol asked, his mum on the verge of bursting into tears. The palliative care nurse patted her on her shoulders and said to the boy: “Yes dear, you are dying. But there is nothing to be afraid of. Buddhadasa Bhikkhu and your friends are waiting to welcome you. Go on, you are a brave kid.”
In his mother’s embrace, his breathing became calm and his body showed no signs of pain. Finally, he looked in her eyes and said: “Mum, good bye.”
“Had my son been in ICU or decided to fight death, we would not have had this special farewell moment. It is very soothing for me to have seen my son go in peace and in my care,” Rangsima said, smiling.
Pongpol’s death is testament to the fact that a good death is possible.
According to Sogyal Rinpoche, Tibetan monk and author of the world-famous Tibetan book of Living and Dying, to assist people to die in peace is a noble gift we can give to loved ones. Our state of mind at the moment of death will designate our future spiritual well-being, he said.
Unfortunately, modern people die lonely deaths. The more educated and well-to-do someone is, the longer and more painful their process of dying becomes. The boons of advanced medical technology help us resuscitate lives, especially those who suffer accidents or acute attacks of disease. But when the very same technology is used upon elderly patients or those whose in late stages of illness, it adversely prolongs death and suffering, said Dr Manote Chokejamsai, Department of Forensic Medicine at Maharaj Nakhon Chiang Mai Hospital.
A 90-year-old patient, for instance, was suffering from a blood-related ailment and osteoporosis. When her heart stopped, a doctor tried to resuscitate her. Her ribs broke, but her heart beat resumed for a short while.
“What is the point of resuscitating a life in such condition?” said doctor Manote. “If she were my mother, I would let her go in peace.”
Some patients who have been pronounced “brain dead” are kept alive on life support equipment, pending a miracle.
“In such a vegetative state, patients are neither living nor dying,” said Prof Swaeng Boonchalermvipas, director of Health Law and Ethics Centre of Thammasat University. “Are we sure that is what they want? Would we want to be like that, and for whose sake are we doing it? Where is the dignity?”
Have we forgotten that death is part of life after all?
In 2008, over 401,981 Thai deaths were reported, according to the Department of Public Administration at the Ministry of Interior. In short, one person dies every minute.
Thai society is ageing. As the numbers of chronic disease cases as well as accidents increase, denying death as a natural process means it now mostly occurs in hospitals under the care of strangers and, more often than not, with a hefty cost of medical fee.
“Death and dying has become complicated these days; we live in denial about it. If we accept death as a part of life, when the time comes we will not have difficulties dealing with it,” said Pramuan Pengchan, writer and former philosophy and Buddhism lecturer.
Many nurses and doctors, even in their mid-forties confessed to never having thought about their own death. Most said they wanted a peaceful and comfortable parting, which is to die in a peaceful and familial environment, surrounded by family and interestingly without the luxury of medical life support. “I don’t want to die in ICU. It is cold and lonely in there, which surprises me since I have never had a second thought sending patients in there,” said a doctor in Khon Kaen.
Conversations about death are taboo in society, thus very few have the chance to communicate about their final wishes and how they want to be taken care of. Thus, many deaths are left in the hands of others, mainly our relatives and physicians.
In the name of gratitude and under the guise of “best care”, many elderly people die in agony and alone.
“I want to die in peace and without aggressive medical aid, but I am not sure my children agree and that concerns me a lot,” said Sommart, a patient in her seventies. “How can I be sure that my wishes will be fulfilled? Should I tattoo on my chest “no resuscitation”?”
Suwanna Saktrakul, a volunteer nurse from Songklanakarin Hospital, added: “Everybody wants to be happy, even in the very last moment of life. We want to be listened to and understood. We want our wishes fulfilled and heeded. Don’t you think it would be sad if no one was to listen to us or give us what we want in our final moment?”
After a decade-long debate on natural death and euthanasia, Thailand has introduced the National Health Act 2007, with section 12, ensuring the rights of individuals to say, through advance directive or a living will, how they wish to be cared for if they are no longer able to communicate.
“This helps physicians help patients better,” said Prof Swaeng. “When patients cannot communicate, physicians need to turn to their relatives. But which one will have final say? At times when there are feuds and disparate opinions, who should doctors listen to?
“This law will bring death and dying to light, out in the open, so that we can talk about it freely and understand it better.”
There are still many controversies and questions concerning the implementation of this law – for example the definition of end state, authenticity of the will, practices to support patients’ wish to die in peace. But for doctors who have been supporting a palliative care approach, there is one main issue – to take the interest of a patient at heart and make their time, both alive and dead, meaningful.
“If we end up in ICU and are supported by machines so we can receive spiritual support or wait for loved ones to come and say goodbye, then the technology is used to support our wishes,” said Assoc Prof Temsak Phungrassami from Sonklanakarin Hospital.
“But if those life support systems are used to sustain our body, and nothing more, then it can torture not only us, but also our relatives.”
Medical intervention can adversely harm dying patients, said Prof Swaeng, referring to a study by the late Prof Sumalee Nimmannit on natural death.
“Sometimes, what we believe will help our loved ones harms them greatly. For instance, in the final stages, feeding food through IV tubes does not help. The body does not want anything at that time.”
“It is important for relatives and patients to have thorough information on available treatments and their consequences so they can make sound decisions.”
Apart from highlighting a patient’s autonomy to take the treatment, the law promotes the idea of a good death.
“People are not only a physical entity. They have emotional, social and spiritual sides as well and we need to tend to all aspects of a person,” said Dr Chatree Charoensiri, deputy secretary of the National Health Commission Office of Thailand.
“It is illegal in Thailand to fatally inject people. This law is about helping patients maintain a good quality of life and experience a good and fulfilling parting in a way they wish for,” said Dr Chatree.
In a hypothetical living will, individuals could specify their spiritual needs; for instance, if they want a monk present, prayers said, and so on.
When our physical body is deteriorating, it is a chance for our spirit to grow, said Prof Swaeng.
“My mother had a stroke and fell unconscious,” said Laddarat, end-of-life care nurse at Maharaj Nakhon Chiang Mai Hospital, Chiang Mai. “The doctor later pronounced her brain dead. Our relatives remained hopeful that medical technology would help. So my mother remained in ICU on life support,” she recalled.
However, this went against the old lady’s will. Laddarat’s mother used to tell her she wished to die at the temple where she frequently made merit. She also mentioned that she did not want any medical assistance to maintain her life.
Learning of the old lady’s trauma, the abbot of the temple sent monks to bring the old woman to the temple.
“The monks chanted auspicious prayers and asked for the physician to take the respirator tube out,” she said. “When the tube was pulled out, I saw my mother sigh with relief and her hands rise into a wai position. She had gone in peace. Everyone was amazed with what they saw from a brain-dead patient.”
“For me, I am happy that my mother’s wish was fulfilled,” she said with a broad smile.
The rules and procedure of the implementation of this law are yet to be prescribed in a Ministerial Regulation. However, we do not need a legal warrant to die in peace if we and our society understand the importance of a good death.
“If we understand the meaning of life that includes and concludes with death, we will feel energised to perform our daily activities with joy. We know that we have the final exam and we know what can be expected and how much time we have, so we can prepare ourselves for it,” said Pramuan Pengchan.
“If we are genuinely aware of this, we will become alert and aware about life.”
Learn more about living will at http://www.thailivingwill.in.th (in Thai). The website is based on a series of workshops and seminars conducted throughout Thailand.
QUESTIONS TO HELP US CONTEMPLATE DEATH
Imagine you are going to pass away soon:
- What do you feel?
- Do you have any concerns or worries?
- What would a good death be for you?
- And if our death could be designed:
- What would be the last sights you want to see?
- What would be the last sounds you want to hear?
- What touch and sensations do you want to feel?
- What kind of conditions and states you want to have?
- Do you want to be with anyone, and, if so, who?
- Where do you want to die?
- How would you live in order to achieve a good death?