In the summer of 2015, I worked with the Taichung Veterans General Hospital, and I now have some understanding of the implementation of hospice and palliative care. I first spent a few days in the hospice ward, where I listened to the staff and talked to some of the patients’ family members and I also read a lot of related materials.
What moved me most was the whiteboard in the small meeting room with the names of the patients and their ages. Many of them were younger than me and even more heartbreaking was that every week, some names disappeared and new names were added, many of people who had not yet turned 50.
After one month of observation and struggle, I decided that I was not going to study for this specialization. This was a minor decision in comparison to the decisions that were made by the patients, family members, medical staff and all the others working in the hospice room.
Life is a succession of choices, all of them difficult, be they psychological, spiritual, family or financial decisions. Looking at physical issues alone, patients face many difficult choices:
Should they continue to accept active treatment, should they accept palliative care and painkillers, and if so, what type and how strong should the painkillers be?
Then there is the decision about invasive tubing, such as nasogastric tubes and catheters — and the unavoidable risk of inflammation and accompanying necessity of antibiotic medication.
In addition, the most crucial issue, which also receives the most attention: the use of respirators and cardiopulmonary resuscitation (CPR).
When a patient stops breathing, medical staff might choose to use tracheal intubation and a respirator to help the patient breathe. Invasive continuous positive airway pressure therapy is the most common method, but are such invasive procedures necessary for patients in the last stage of their life?
When a patient stops breathing, the next step is CPR. Medical staff press the center of the chest 30 times at the lower section of the sternum. Is such forceful treatment really necessary for a patient who shows weak or no vital signs?
The American Heart Association suggests that there is no need to carry out CPR on patients whose conditions can no longer be reversed or if death is unavoidable.
During the last stages of life, hospice care remains the best option. The Hospice Palliative Care Act (安寧緩和醫療條例) was proclaimed in June 2000. Now, 17 years later, the proportion of patients that receive hospice care remains low.
About 150,000 Taiwanese die each year, and of those, more than 40,000 die from cancer. More than 30 percent of patients with end-stage cancer choose to receive hospice care, but less than 1 percent of all other patients make the same choice.
In 2009, the National Health Insurance (NHI) Administration expanded the provision of hospice care available under the NHI to include patients suffering from dementia, stroke, congestive heart failure, pulmonary disease and kidney failure in addition to patients with cancer or amyotrophic lateral sclerosis — also known as Lou Gehrig’s disease and motor neurone disease.
These patients also have the right to a higher standard of care during the final stage of their lives.
Patients with acute illnesses are more likely to encounter the choice of whether or not to use CPR. Emergency rooms treat acute illnesses, while hospice care is offered to people with terminal diseases.
In comparison, the environment in hospice rooms is much nicer, safer and more peaceful. In this warm environment, everyone is calmer and more relaxed than in an emergency room.
Most people dislike making decisions in stressful situations.. That is why, if a decision becomes necessary, it should not be rushed through in a chaotic environment. Trust in the judgement of experts is a much better solution than having family members argue about an issue.
Medical staff, in particular hospice staff, have a much deeper understanding of the factors that affect the end stages of diseases than the general public.
They have gained experience from accompanying innumerable families and guiding them through these choices. They also have access to more data and have developed their expertise has through a long period of education, training and endless discussions and reviews.
These are all reasons why family members should trust, respect and cooperate with the suggestions of medical staff.
Peng Huai-chen is an associate professor in the Department of Social Work at Tunghai University.
Translated by Perry Svensson
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