By June Tsai
In July, a Taiwanese anesthetist, a terminal cancer patient, had a party to bid farewell to her family and friends.
News on this “living funeral” and the participants’ openness to death amazed readers in a society where talk of death is customarily avoided. The tendency to shun such communication has also hampered the advancement of end-of-life measures including palliative care, life support withdrawal and do-not-resuscitate orders.
In the face of this cultural taboo, hospice care began to develop in Taiwan thanks to the efforts of a group of medical professionals dedicated to ensuring that terminally ill patients get the best care possible, without overtreatment.
Mackay Memorial Hospital formed a palliative care team of physicians and nurses focusing on patients with terminal cancer in 1987, and in 1990 the hospital built Taiwan’s first hospice, with eight beds, according to Fan Chun-kai, a psycho-oncologist who served chairman of Taiwan Hospice Organization for four years.
Also in 1990, a foundation was set up to cover necessary costs because hospice care was not yet recognized by the country’s National Health Insurance system, Fan said. The Taiwan Hospice Organization was established in 1995 to promote related practices, and as more and more practitioners were involved, professional associations of physicians and nurses were also founded.
At Mackay, palliative care was also integrated with other wards, bringing physicians from different specialties together with social workers to support patients not in the hospice ward. This collaborative model has spread to other hospitals as well.
Department of Health tallies show 37 hospitals nationwide now provide hospice care, and 64 offer at-home palliative care services. More than 7,000 patients get in-hospital palliative care each year, representing 15 percent of all terminally ill cancer patients. Overall, an estimated 13,000 cancer patients—not necessarily incurably ill—receive this services annually, in hospices, regular hospital wards or at home.
Cancer has been the leading cause of death in Taiwan since 1982, and in 2006 NHI began to cover hospice care for cancer patients. By January 2011, 39 percent of terminally ill cancer patients had received palliative care services.
Although this coverage represents progress and is higher than that in other countries, it did not reach the DOH’s goal of 50 percent by 2010, Fan said. Clearly, more work is needed to promote the concept of hospice care as helping patients face death with dignity.
“People often see the hospice as a place to await death, but it actually adds something more to their care with specialists attending to their physical, psychological and spiritual needs, rather than leaving them at death’s mercy,” said Sandy Chang, head nurse of Mackay’s hospice ward.
Hospice care also benefits patients and their families by helping them look at death as part of life. “Without support, survivors may collapse following the death of a loved one due to the sorrow and stress of long-term care giving,” she said
“But it has been rewarding that family members of our patients would return to our hospice department as volunteers, hoping to pass on their experience of accompanying loved ones on the path to death,” she said.
While palliative care can help both patients and their families deal with death, families may still face agonizing decisions—and controversy—when the patient experiences a life-threatening medical emergency or is in a coma.
The Hospice and Palliative Care Act, first passed in 2000, gave citizens the right to complete a DNR and assign durable power of attorney.
The law was named in a compromise, according to Chao Co-shi, a professor at National Cheng Kung University’s College of Medicine. “Legislators wanted to avoid negative public sentiments to expressions such as death, end-of-life and terminal patients.”
“But the important thing was that patients, their families and doctors now had legal recourse for action,” said Chao, an expert in the ethics of health care and member of ethics committees at several hospitals. “It is the natural and legal duty of doctors to save lives, but to prolong a patient’s life at any cost only incurs more pain for the patient. A DNR order helps doctors do what they can to save a life, rather than prolong the process of dying.”
The statute as originally passed allowed the withholding of cardiopulmonary resuscitation when the patient has been diagnosed as terminally ill by at least two physicians and a signed DNR order exists. Family members of a comatose patient could authorize the order, and a 2002 amendment permitted them to authorize withdrawal of life support under the two conditions above.
The latest revision, effective from January 2011, further stipulates that in the absence of any advance health-care directive, durable power of attorney or family agreement, life support can be discontinued with the unanimous written consent of a patient’s spouse and immediate family members, plus the approval of the hospital’s medical ethics committee.
Despite the provisions of the law, however, maximum treatment without regard for efficacy or benefit to the patient is still the norm, Chao argues. This is due to the prevailing view that not using CPR or life support is equivalent to abandoning the patient, along with the fear that insufficient treatment will lead to death.
“There was a case in which the patient, whose limbs were blackened and distorted by poor circulation, smelled rotten immediately after he was removed from the extracorporeal membrane oxygenator (ECOMO),” Chao said.
In other cases, “intrusive treatment with tracheostomy tubes, nasogastric tubes or catheters only inflicts pains, while seeing all those tubes coming out of the body of an unconscious patient can cause grief for family members too,” she said.
Besides inflicting pain, life support for the terminally ill is costly, Chao said, citing statistics showing that only 26 percent of ECOMO treatments are successful, and prolong the average patient’s life only 30 days, at a cost of NT$4.75 million (US$165,000).
For families, of course, the decision to withdraw life support may still be very difficult, even when patients have expressed the desire not to have their lives prolonged. In such cases, hospice advocates agree that family meetings convened by the hospital may help resolve the dilemma.
Hospital ethics committees must also do more as consultants and educators to help families and doctors make ethical choices, Chao said.
According to an informal poll by Chao, very few hospitals have pulled the plug on terminal patients. Instead of following the procedures outlined in the act, hospitals simply maintain life support, or, fearing litigation, ask families that insist on withdrawing life support to sign an against-medical advice-discharge form.
Change has also been slow to come with regard to extending life artificially in emergency situations. Only 52,000 people have signed DNR orders and had it noted on their NHI cards, according to the health authorities.
Thus although Taiwan is the first country in the Asia-Pacific region to have a law recognizing the validity of a citizen’s advance health-care directive, there is still a long road ahead before dignified end-of-life care becomes the norm, Chao noted.
This article first appeared in Taiwan Today in Aug. 7, 2011.
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