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Patient’s rights of autonomy

By: Shirin Akbar Rajan

I was assigned to a 40 years old patient in XYZ hospital with end stage lung cancer. The patient was hospitalized since last 25 days and was becoming sick each day. Doctors tried different treatment but to no avail. It was clear that prognosis of the patient was very poor. The attending physician decided to keep patient on “No Code or DNR”. When this was discussed with the family they refused to do so. The patient was the only heir of the family left as patient’s elder brother also died in a situation where family and doctors decided to put off the ventilator. As a nurse I was also worried about what to be done if patient goes into arrest. Eventually the hospital’s ethical committee made the family agrees to put patient on “No Code”. In this whole situation no body asked the patient his wish or took his permission although he was conscious and competent but the family requested not to disclose the code status to the patient.

This incident was significant for every one involved in the scenario. For the patient and family it was a decision regarding life and death but the sad part was that the patient was not at all involved in this decision making. For doctors this incident was an ethical issue, where knowing that resuscitation will prolong patient’s sufferings and delay his death it was their duty to recommend some action which is in patient’s best interest. For nurse this incident was significant because she could be the first person to encounter any situation of patient going into an arrest and hence she should be clear about the code status. I felt grieved as it was a very serious and difficult decision for every one involved.

Evaluation:
This incident stood out for me for several reasons. First of all the ethical principle of autonomy was exploited by not taking patient’s permission before deciding the code. Secondly the family was reluctant but the physician and the ethical committee insisted them. Thirdly effective involvement of the nurse was not observed in this situation. Her only role was to wait for doctor’s decision which was shocking as she, being the patient’s advocate, should be practically involved in this critical decision making process.

Analysis:
While analyzing this incident many questions rose in my mind. First, the families decision of not to communicate the code status to the patient was questionable and also that this critical decision was taken without involving the patient him self. It’s possible that the family might have avoided communicating the code status to keep the patients suffering from increasing. They might have thought that this information would make the patient anxious and hinder his coping process. On the other hand doctors should have convinced the family to involve the patient in this decision, might be possible that the patient himself would have agreed on No Code status decreasing the family’s emotional suffering and the feeling of guilt. Also if the patient knew his code status then he might have wanted to spend quality time with his family as he would be aware that his time on this earth is short. He might have wanted to put some of his personal, family or financial affairs in order or get involved spiritually and get prepared to peace full death.

Again thinking about the family’s behavior more questions arise that why didn’t the family accept doctor’s suggestion of No Code and why the involvement of ethical committee arose? The answers to this question may be that the family had already lost their elder son in almost a similar situation and they might still be feeling guilty. Another reason could be the religious believes or cultural values which might have forced the family to think that putting their son on No Code status would be equivalent to kill their son. It is also possible that in the beginning the doctors didn’t convey the message effectively but lately the ethical committee was better in explaining the details which allowed the family to agree onto the No Code status.
Finally as a nurse I ask my self that why didn’t I participate in this decision making and play the role of patient’s advocate to ensure patient’s involvement in this decision. I felt resistant to interfere in doctor’s decision. May be I was not competent enough to become a part of the decision making team and thought that a decision regarding life and death of a patient is not nurse’s responsibility.

Synthesis:
The solution or a better way to handle this situation as far as I have understood by literature and AKUH DNR policy review could be that firstly in decision like this truthful disclosure to and involvement of an adult conscious and competent (age 18 and above without any mental illness or/and severely impaired judgment) patient is very important, as patients have right to know and decide about their own life called principal of autonomy. According to Tucket (2004) “autonomy is an ethical principle, meaning self determination of and self governance over one’s action. In order to govern care for himself patient requires nothing less than truthful disclosure.” Tucket further adds that “anything other than truthfulness diminishes patient’s ability to be autonomous and fails to show respect to him” (p505). Secondly in this case doctors and nurse should have tried to convince family for truthful disclosure and involvement of patient on the ground that this will help patient to plan his own care and spend quality time with his family. According to Dias, Chabner, Lynch, Penson (2003) “when patient is dying an honest discloser from physician will help patients address their emotional and spiritual issues and focus on symptom management” (p595). Doctor’s communication should be clear and adequate using plain language and detailed explanation to avoid any misunderstanding. The involvement of ethical committee was very right this is clearly defined in AKUH DNR policy point no 4.3 which says that In those circumstances where patient or family wish resuscitation but the physician believes resuscitation is not medically indicated he should attempt to resolve the disagreement .When these efforts fail he should involve hospital ethical committee to resolve the disagreement . Importantly the nurse’s role should be much more in this case; she should get involved in discussion and decision making also help patient and family to cope with this sad decision. According to Tuckett (2004) a bedside nurse being in unique position should take doctor’s permission to discuss patient’s prognosis if she feels competent in talking truthfully with patient (p546). According to Kring (2007) “The vital role that nurses must play is to ensure that each patient’s final moments are dignified and spiritually significant” (p130).

While reflecting on this incident and reading about DNR/NO CODE I learnt about the medical condition in which resuscitation is futile and the exact process of initiating DNR process I also developed the insight of nurses role in this situation and would like to recommend all nurses and CNI to assess their learning needs, and educate nurses to participate in this decision making as patient’s advocate and facilitators in end of life care keeping in mind patient’s cultural and religious values. One more recommendation is about patient’s advanced directives .I think doctors and nurses should gain significant knowledge in this regard and also educate terminally ill patients regarding its importance. This is also supported by patient’s self determination act. According to Kelley, Lipson, Daly, Douglas(2006) “Advanced directives (ADs)are documents that enable competent person to state their preferences for future healthcare decisions … the living will and the durable power of attorney are the most commonly used types of Ads”(p42). It is ideal that all patients should have their Ads but for terminally ill patients it is very important, as this may help patients and family to think on such critical situation in advance and make the decision some what easy. According to Kring(2007) “The increased education and support for Ads will help patient to be empowered to control what medical intervention they receive thus preventing agonizing bedside debate between providers and family members “(p129). This, if could have applied in our scenario may have benefited all who were involved. It is recommended that nursing schools and NES should include Ads content to make nurses competent enough to help patients and family to take end of life decision. Also community and patient based teachings and awareness programs should be develop to address this issue in an easy, accurate and culturally sensitive way.