【May 2017】2- EOL definition is still ambiguous for non-cancer terminally ill patients and leads to low palliative care access rate

HFT secretariat

The EOL definition is hard to apply to non-cancer diseases

"EOL means someone is about to die,” says Dr. Jyh-gang Hsieh from Hualien Tzu Chi  Hospital. Palliative care for advanced cancer patients has  been promoted for many years, and it is easier for the general public to accept and understand what it is. However, when defining EOL for non-cancer patients and what can be done for them, it is a big challenge for both medics and family members.

The National Health Insurance Coverage for palliative care includes advanced cancer, motor neuron disease, advanced dementia, chronic obstructive pulmonary disease, heart failure, chronic liver cirrhosis, chronic renal failure, and etc. In reality, however, besides advanced cancer patients, other terminally ill patients seldom receive palliative care. Dr. Ping-jen Chen from Chimei Hospital’s Family Medicine Department points out that 25% of the elderly above 65 years old die because of cancer, and the rest die because of organ failure or hypofunction, including heart/lung failure, dementia, and etc. This suggests that most non-cancer, terminally ill patients had a difficult time at EOL without proper palliative care.

Dr. Ping-jen Chen points out that the trajectories of disease progression are different for non-cancer and advanced cancer patients. In order to determine if cancer patients are curable, oncologists categorize advanced cancer patients according to the stages of cancer. However, the survival period of most non-cancer patients could last anywhere from 6-12 months with much instability, and thus, much more difficult to predict than cancer patients.

Dr. Hung-bin Tsai from the Trauma Medication Department at National Taiwan University Hospital acknowledges that current EOL definition is mostly defined by time. For example, EOL for cancer is generally 3 months, but in the United States, it could mean up to six months under natural conditions, and in Britain, it could mean up to a year. Thus, time should not be the only factor considered, but the quality of life should also be a major consideration.

Similar demands when at EOL

Dr. Ping-jen Chen thinks there are two EOL concepts. One is the end stage of the disease itself, and the other is the end stage of life. Currently the definition of EOL focuses only on the end stage of diseases. Hence, for advanced cancer it is clearly identified as having a 3-month survival period. However, non-cancer patients have different progressions of diseases; for example, patients with organ failure might have anywhere from 2-5 years of life remaining and patients with dementia might have up to 8-9 years. Thus, it can be very difficult for clinical physicians to estimate the EOL stage of non-cancer diseases.

The demands of palliative care for both cancer and non-cancer patients have little difference. For instance, breathing difficulties, including breathlessness or pain, are common to both cancer and non-cancer patients. Dr. Ping-jen Chen believes, especially as relates to chronic organ failure for many non-cancer patients, that depression, stress, and emotional pressure are common when facing the irreversible aging process. Thus, these challenges will require the support within family, and also the holistic care from palliative care.

Learn the demand and the right timing

As Dr. Hung-bin Tsai points out, the current difficulty for non-cancer patients when promoting palliative care is the reliance on scientific monitors to evaluate if patients have reached end of life stage, without attention to patients’ social backgrounds like values, life experiences, and family. According to a survey conducted by CommonWealth Magazine, more than 70% Taiwanese wish to die well without the means of endo tubes, respirators, or electric shock. Only 50% are willing to accept the fact that their family members are dying and foregoing the mentioned medical measures. According to the survey, unless patients have previously decided on an advance directive, their family members are often caught between filial piety and emotions, and tend to make decisions against the patients’ will.

Hence, confirming a patient’s personal will is the first step for palliative care. Most hospitals now take a more proactive stance to ensure that non-cancer patients have the opportunity and access to receive palliative care. For example, Chimei Hospital’s administration encourages Advance Care Planning, so that patients can plan ahead for necessary medical treatments as well as to receive palliative care. Additionally, in order to provide palliative care access for non-cancer patients, the palliative team has actively invited all divisions in the hospital to be involved and assist the non-cancer terminal patients with better symptom control. So far this has received positive feedback from the patients and their families, and has ensured better interaction for both sides. This not only demonstrates the value of palliative care, but also increases the percentage of patients receiving palliative care from 6.5% to 25% during the 2011-2015 periods.

So when is it the appropriate time for non-cancer patients to receive palliative care? Dr. Tsai believes that apart from the patients’ own will, indicators include comorbidity, frequent hospitalizations, deteriorating physical stamina, and low quality of life. Having extensive experience meeting with patients’ families, Dr. Tsai always encourages patients to think about their end stage of life regarding EOL medical treatment.