Die With Dignity – A Global Issue
In Japan, the term "shukatsu" – preparing for the end of life - has become a catch phrase among the elderly. In Europe and North America, "living wills" or "advance directives" are widely discussed.
Die With Dignity – A Global IssueBy Ming-ling Hsieh
From CommonWealth Magazine (vol. 560 )
How to prepare for the end of life is an ethical issue that does not only involve individuals and their immediate families. As the average lifespan expands while medical progress makes it possible to keep people artificially alive for years, societies around the globe are exploring end of life choices.
First of all, medical institutions and professional associations around the world are asked to come up with clear definitions and clinical practice guidelines as to what constitutes "futile treatment," when and how "futile treatment" should be withdrawn or withheld, and how such decisions can be communicated to a patient's family.
Without such supporting evidence and documented procedures, physicians will easily give priority to life-saving measures such as cardiopulmonary resuscitation (CPR) regardless of the consequences. For fear of getting embroiled in conflicts with a patient's family, or even be sued, physicians shy away from touching the hot potato of medical futility.
In 1997, the American Medical Association stated that every medical institution should formulate a "medical futility" policy and set up a standard operating procedure for discussing and determining medical futility for every individual case.
The association suggested seven steps for the discussion process: First, hospital staff should discuss with the patient and his family what constitutes futile treatment and which medical practices are ultimately acceptable to each side.
ICU the Gatekeeper
Ideally, the two sides (patient and physician) will make shared medical decisions and resolve points of contention. They can also draw on help from outside, bringing in a counselor who helps patient and family to make a decision. Should it prove impossible to resolve a conflict, the hospital's ethics committee can be asked to get involved.
If the ethics committee supports the patient's decision but is not able to convince the physician, the patient is referred to another doctor. Should the ethics committee support a decision by the physician that the patient finds unacceptable, the patient can be transferred to a hospital that supports the patient's stance. If transfer to another hospital is impossible, the physician may cease futile treatment.
Five years ago, Chen Shew-dan, director of the non-surgical intensive care unit at National Yang Ming University Hospital, did an internship at the Auckland City Hospital in New Zealand. She found that the intensive care unit physicians had a gatekeeper role because they would hold meetings to decide which patients should be admitted to the ICU.
In her 2010 book Say Goodbye to Cruel Kindness, Chen points out that when it becomes clear in the emergency room that a patient is going to die regardless of whether he receives intensive care, he is better placed in a hospice care unit or an ordinary hospital room.
If a patient is already in intensive care and doctors determine that his condition is incurable and leading to certain death, they should call a meeting with the patient's family to seek their consent before they withdraw life-sustaining medical equipment such as a ventilator or a dialysis machine.
Aside from hospital-set standards, the medical associations can also provide clinical practice guidelines that medical staff can resort to when facing medical futility situations.
Five years ago, the Renal Physicians Association in the United States revised its Clinical Practice Guideline on Shared Decision-Making in the Appropriate Initiation of and Withdrawal from Dialysis.
The guideline recommends that dialysis is withdrawn or withheld for patients with acute kidney injury, stage 4 and 5 chronic kidney disease or end-stage renal disease with a particularly poor prognosis. These would include elderly age 75 and older, patients with multiple severe illnesses, marked functional impairment and severe chronic malnutrition.
Another criterion is, when asked whether they would be surprised if the patient died in the next six months, clinicians answer with a clear "No."
Furthermore, foregoing dialysis should be considered for advanced dementia patients who pull out dialysis needles, patients with terminal illnesses other than kidney-related causes, or patients whose condition is too unstable. (For example, due to low blood pressure.) In recent years, Taiwan has drawn up similar guidelines.
If people shall be empowered to "prepare for the end of life" and futile treatment is to be avoided, then the quality of specialist hospice or palliative care must improve.
British doctors launched the Gold Standards Framework in 1998 to provide a gold standard of care for people nearing the end of life. They hope to improve the quality of end-of-life care, enhance cooperation among medical care teams and promote community care to enable people to die at home rather than in a hospital bed.
The organization also pushes for the establishment of hospice care wards in hospitals and nursing homes, and provides training and accreditation. Since 2004, some 2500 nursing care centers have participated in training, half of which gained accreditation.
Talk and Write about Death
In the long term, our society and the overall environment need to change in order to support individual end of life choices. It will take a social transformation.
Encouraging people to talk about their own death is a good starting point.
The John Tung Foundation in Singapore began to educate the public about the concept of "preparing for the end of life" in 2006.
This September, the foundation staged a comic play on the rather serious topic of death. On a makeshift outdoor stage the actors discussed in an entertaining mocking way questions such as how to prepare for their own death and funeral, and how to discuss the issue of death with their children. They also screened short films to encourage older people to start talking about death and dying.
"Advance care planning," which has become quite popular in recent years, can also help people face their own final stage in life.
Japan has proposed the concepts of shukatsu and "ending notes" – people write down life events, memories, advance care planning, funeral arrangements, inheritance matters and messages to surviving family and friends.
Shukatsu manuals as well as special "ending note" notebooks are readily available in bookstores, reminding older people to plan their last journey well ahead. Questions such as 'What kind of treatment do I want?' 'What kind of funeral do I want and how much do I want to spend on it?' 'Who should be notified when I die?' can all be considered and written down beforehand.
New Zealand founded the National Advance Care Planning Cooperative in 2010 and invited citizens to join on a voluntary basis. The cooperative provides various thinking aids and planners that guide people through a simple five-step process for drawing up an advance care plan. The plan is discussed with family members, the medical team and the family doctor and is reviewed annually. Similar initiatives have been proposed in Taiwan lately.
People around the world are learning to confront their own mortality. All of us – medical specialists, family and friends and the concerned individual need to learn how to say good-bye and make this important final journey a peaceful, dignified one.
Translated from the Chinese by Susanne Ganz