Factors influencing terminal cancer patients’ autonomous DNR decision: a longitudinal statutory document and clinical database study

DNR decision is an important end-of-life decision. It is considered important that patients be informed of the terminal nature of their disease, their end-of-life care options, and be given the opportunity to make these decisions by themselves [14]. In this study, we found that a large proportion (43.65%) of cancer patients who had been hospitalized did not sign these DNR documents by themselves. And many of them had the first DNR order within their last week of life (40.81%). Patients whose final attending physicians were family medicine practitioners, and those who had received hospice palliative care were more likely to have signed DNR documents in person. Patients who were older than 65 years, those with no formal education, those with ≥ 3 children, those who had the first DNR order prior to death ≤ 29 days, and those whose last admission was to ICU were less likely to have a personally signed DNR document.

Increased DNR-LOI proportion in Taiwan

The signing of DNR documents conforms to the public’s perception that a terminal cancer patient should have the right to decide how he or she wishes to die [15]. Accepting DNR decisions made by terminal patients themselves shows regard for their autonomy. In this study, the proportion of personally signed DNR-LOI was more than half (56.35%), a significant increase compared to the 22% in another Taiwan study in 2013 [16]. This increase may be due to Taiwan’s NHI decision to pay for hospice palliative care provision and add the optional note of personal DNR wish on NHI cards promoted via hospital subsidies for community education [17]. It may also be due to the addition of respect for the autonomy of terminal patients to the criteria for hospital accreditation by the Ministry of Health and Welfare and an increase in the number of much older patients in Taiwan’s aging society that the people can gradually face the natural death process. In addition, the rise in the number of older patients who have received formal education in their early years would make them better able to understand their conditions and communicate with medical staff by themselves.

Factors facilitating signing DNR-LOI

This study found that patients who were cared for by family medicine physicians prior to death at last hospitalization and those who had received hospice palliative care were more likely to have signed DNR-LOI. The Taiwan Family Medicine Association’s certification standards for specialist physicians’ training programs required that palliative care skills be well-trained in symptom control, communication, and medical ethics. Considering that all the family medicine practitioners have received this training, they would probably be more comfortable discussing end-of-life care options with terminal cancer patients and assisting them in signing the DNR documents in person than other medical specialists, such as surgeons and oncologists who may not be required to receive as much communication training and who may have more concern with other matters, including medical treatment and the prolongation of life for cancer patients [18,19,20]. According to the Taiwan Hospice Palliative Medicine Society statistics, 771 (70.04%) of their members had family medicine backgrounds in 2020. It indicates that family medicine specialists have considerable enthusiasm for providing terminal care.

Taiwan’s NHI covers the expense of hospice palliative care provided by a professionally trained team composed of doctors, nurses, and social workers. Following NHI regulations, the team members must have 80 h of hospice palliative care training and have at least 20 h of continuing education each year. The course includes ethics and law of terminal care, communication skills, and specialist consultation. Hence, patients who had received hospice palliative care were also more likely to have signed DNR-LOI. And hospice palliative care teams may pay more attention to patient autonomy while serving their patients.

Previous studies have found that most terminal patients want to be informed of their actual condition, especially by physicians [21,22,23]. Therefore, physicians must learn skills to help them relay bad news, express empathy, give supportive feedback, and accomplish consensus for end-of-life care. The commonly used clinical models for these included SPIKES (setting, perception, invitation or information, knowledge, empathy, and summarized or strategize) six steps as well as the Japanese SHARE (supportive environment, how to deliver bad news, additional information, and reassurance and emotional support) model, and the shared decision-making model [24,25,26].

Factors hindering signing DNR-LOI

We found that advanced age, having more than three children, having no formal education, delay of the first DNR order, and being cared for in an ICU negatively affected the patient’s likelihood of signing a DNR-LOI. Studies have found that, in addition to disadvantages in cancer treatment options, age-related physical decline, delay in tumor detection, psychosocial factors, low chances of seeking medical attention, and high comorbidities may all hinder the process of truth-telling for older patients [27, 28]. However, it has also been found that older patients desire to understand the cancer diagnosis and prognosis as much as younger ones [23, 29, 30].

Aged people are often disadvantaged in accessing healthcare resources due to poor health literacy, deteriorating performance status, lower education levels, and economic dependence [31]. We also found signing the DNR-LOI was negatively associated with patients aged ≥ 65 years in the present study. Taiwan has been an aged society since 2018. Some aged terminal patients may lose the opportunity to have personal DNR decisions because of underlying cognitive dysfunctions or sudden physical deterioration due to multiple co-morbidities. The public is still not used to openly discussing end-of-life issues in geriatric care for worry of offending the elderly’s taboos. Traditionally, medical staff is more accustomed to prioritizing young family members to discuss end-of-life care plans for aged patients in Taiwan. Many young people have never personally dealt with matters related to the death of their elders. They may take avoidance measures when facing the issues of end-of-life treatments of their beloved elders, that is, not telling the truth and postponing decisions. Aged patients may be unable to know the fact that they have been in terminal status when they can still master autonomy. Nevertheless, the Hospice and Palliative Care Act’s legislation indicates that most citizens have agreed with the futility of life-prolonging treatment for dying terminal cancer patients. The aged patients’ close relatives usually signed the DNR-CF to forgo the elderly from CPR suffering in the final. So, the total DNR rate signed by close relatives remains high.

Culturally speaking, in Asia, the topic of death is traditionally avoided. For example, many public buildings, including hospitals, have no “4th” floor because the word “four” is a near homonym of the word “death” in many East Asia countries [32]. Having three or more children negatively affects the likelihood of DNR-LOI. Studies have found that family members often try to interfere with the physician’s communication with the patient of his or her cancer diagnosis and prognosis in Asia, UK, US, and Canada [21, 33,34,35,36,37]. This reluctance, combined with the East-Asian value of harmony and stability among family members, some of whom may not have come to terms with the thought of impending death, make end-of-life care discussion hard [38]. The more family members involved, the more difficult it is to reach a consensus. Studies found that family meetings for end-of-life care decisions, especially when conducted prophylactically or proactively, effectively improve family and staff satisfaction and reduce resource utilization [36, 39]. Advanced care planning education can also increase people’s knowledge and positive attitudes towards death [40]. We suggested that such programs be carried out regularly through media promotion and community activities to increase social acceptance.

Close families who sign the DNR-CF usually worry that the patients will suffer emotional breakdowns, cranky thoughts, or even lose the will to live if they learn the terminal fact. Medical staff should empathize with their grief and anxiety about the upcoming loss of loved ones. It is essential to proactively provide a channel for the family to express emotions and help them deal with the patient’s characteristics and cultural attributes. Medical staff can remind family members that they know the patient most. They may facilitate patients to make medical decisions according to personal life values in a way patients can understand and accept. Such as, the word “worst health condition” may be used instead of “death” or “tube and mechanical treatment” for “resuscitation” when discussing DNR issues.

We also found that a lack of formal education, delayed DNR discussion, and the last admission to ICU reduced the likelihood that DNR-LOI would be signed. Medical staff and relatives may worry about the ability of poorly educated patients to understand the physiological and medical details regarding their terminal cancer conditions and the content of the DNR-LOI. In addition, these patients are mostly much older people with hearing, visual impairment, and other comorbidities that might interfere with their decision-making. The timing DNR discussion is also relevant. Those with the first DNR orders at ≤ 29 days from death usually have more weakened physical conditions, have more stressful physical symptoms, and be less cognitively able to deal with technical and sensitive discussions. Physicians at this point would be less likely to initiate the discussion. Similarly, the severe medical conditions, coupled with respiration machines, nasogastric tubes, and sedative agents, make this discussion difficult in the ICU. We recommend that medical staff initiate the conversation about DNR issues with terminal cancer patients personally no later than when their estimated survival is close to 1 month.

Strengths and limitations

The strength of our study lies mainly in the longitudinal statutory DNR document and clinical data used in its analysis. While most patient autonomy studies are cross-sectional and questionnaire-based, our analysis used two years’ clinical data and objective legal document records maintained in quite representative tertiary medical centers in Taiwan. The results explicitly present the fact of autonomous DNR decisions by terminal cancer patients in clinical care. The limitation of our study is that the kind of data extracted from medical discharge records does not contain clinical details. For example, hepatic coma, sepsis, and disturbance of consciousness caused by brain metastases may prevent patients from mastering autonomy. And the electrical medical records do not contain their attitudes towards death, which may be related to the timing of autonomous DNR decision-making.

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