End of life Decisions: Case Study
Ethical quandaries develop when individuals or
communities are forced to make difficult judgements involving moral principles
or values that are in contradiction with one another. These quandaries
frequently give rise to challenges and disputes. Because they require
individuals to make decisions between opposing interests, ethical dilemmas can
offer substantial problems. However, there is not always a straightforward
answer to these conundrums. Its include decision-making conflicts, stakeholder
conflicts, legal and regulatory conflicts, public perception and reputation and
emotional distress.
It is essential to confront ethical conundrums in a
methodical and reflective manner, taking into account a variety of viewpoints,
ethical frameworks, and the potential outcomes of one's actions. Participating
in open discourse, looking for ethical counsel, and fostering a culture of
ethical awareness are all things that may help reduce the likelihood of
disputes and make it easier to deal with these issues. The decision to put an
end to one's life presents complicated obstacles and tensions since it requires
one to make challenging choices regarding medical treatment, care, and the
preservation of human life in the face of severe circumstances or terminal
sickness. This moral conundrum emerges when individuals, families, and
healthcare professionals are put in a position where they must make decisions
that will have an effect on the persons' quality of life, autonomy, and dignity
as they draw closer to the end of their lives.
Communication that is both open and empathic is necessary to address the problems and tensions that are inherent in end-of-life choice dilemmas. This communication must involve patients, their families, healthcare providers, and other stakeholders. Access to palliative care, advance care planning, and ethical frameworks, such as shared decision making models can all be helpful in navigating these issues and promoting compassionate decision-making in end of life circumstances.
1. Case Study 1
Adam was a 2-year-old child with congenital acute myeloid leukemia. He was admitted to the pediatric intensive care unit (PICU) after receiving an allogeneic bone marrow transplant. One week after the transplant, a severe pulmonary infection developed, resulting in irreversible lung injury; he was ventilator dependent. Adam was a patient in the PICU for 2 months and he had good and bad days. On his bad days, the PICU staff struggled to manage his hypoxemia, hypercapnia, and hemodynamic instability. He had several close calls to death, including being resuscitated twice after having cardiac arrests. Neurologically at times, he opened his eyes; he had limited motor ability. When he became restless, he was given sedative drugs.
Several family meetings
occurred over his 2-month PICU stay. The palliative care team was consulted 5
weeks into his stay. At the most recent meeting, the palliative care APRN
reviewed Adam’s illness trajectory, discussed his current condition and told Adam’s
parents that the team would like to consider a change in the focus of Adam’s
care.
The pediatric intensivist
discussed Adam’s poor prognosis and his parents were given time to ask
questions. The palliative care APRN discussed the possibility of focusing
Adam’s care on comfort and suggested that it was time to consider decisions
such as withholding cardiopulmonary resuscitation (CPR) if Adam’s heart were to
stop again. She asked Adam’s parents whether they would support this decision.
Adam’s mother said that she agreed that CPR should not be started if her son’s
heart stopped. Adam’s father became angry and stated that the staff was giving
up on his son. He absolutely wanted all treatment continued, including CPR. He
got up and stormed out of the conference room.
Adam’s PICU nurse was not sure whether to stay in the meeting or leave. She decided to leave and look for Adam’s father. She found him sitting at his son’s bedside crying. He told her that he needed a little time alone, so the nurse left and gave him time with his son. When she returned, she acknowledged how difficult it must be to participate in these types of decisions. Adam’s father told her that he did not want to give up on his son. The nurse reinforced what good parents both he and his wife were. Adam’s father said that he needed time to think about everything. He had hoped that his son would recover and he was just starting to realize that he might not. The PICU nurse emphasized that Adam would continue to receive the best care possible, regardless of what decision was made, and that the team was there to help not only Adam but also his family. (Wiegand, 2015, pg. 145)
This case study presents a
conflicting decision between both parents of a terminally ill 2-year-old boy
with acute myeloid leukemia. Despite a poor prognosis as well as multiple
resuscitations from cardiac arrests, the father refused to discontinue resuscitation
attempts with the perception that the medical team is giving up on his son. The
mother, however, was accepting of the decision due to the condition of her son.
The medical team, however, was adhering to the ethical principle of autonomy,
by allowing both of the parents, the autonomous legal guardian of their son, to
give their final decision on this end-of-life matter. Despite wanting to
provide the best treatment that may benefit the patient (beneficence), the
medical team also would like to reduce and minimize any harm that may be
inflicted on the 2-year-old boy (non-maleficence).
One of the dilemmas that
may be seen here is the contradiction between the father’s decision from the
medical team’s advice. Other than the literal physical definition of ‘alive’
towards the patient, the decision-maker, in this case, the parents, must also
consider the weight of their son’s quality of life should the treatment and
resuscitation be continued, apart from the consideration of their cultural and
religious norm. The process of end-of-life decision-making should consider the
well-being of the patient from all aspects; physical, emotional, religious, and
even personal beliefs (Puteri, 2015). Though admittedly, a 2-year-old may have
less consideration for religion and personal beliefs, the consideration of
end-of-life decisions should also include the immediate family and guardian.
The counsel team did a
praiseworthy job in assuring the parents that they will strive in providing the
best care possible for whichever path the parents choose to decide. Should the
parents choose the continue treatment, the medical team will work hard in
providing the best treatment that benefits the patient, and if the parents
choose to discontinue treatment and resuscitation, the medicals team will also
give as much effort in maximizing comfort and care if the provision of the best
palliative care for their son, Adam.
Ethically, this end-of-life
decision may only be made by the parents and should not be interfered with by
any other party. However, the medical team and the psychological support team,
if any, should be ready to be transparent and honest (veracity) in providing a
full, detailed explanation of Adam’s condition to both parents. The parents
should be able to make a fully informed decision and psychological and
emotional support services should be made available to the parents should they
need them. End-of-life care is an all-hands-on-deck situation where every party
serves a huge role in ensuring the best outcome for the patient, the parents as
well as the medical team. Despite everyone’s involvement, both decisions of
continuing or discontinuing treatment are not ethical violations as long as all
information is given and received by all parties involved
2. Case Study 2
The case of Ms. Rahimah is
a hypothetical case study of a 65-year-old woman with end-stage chronic
obstructive pulmonary disease (COPD), a condition characterized by the
progressive deterioration of the airways in the lungs. Despite undergoing
various treatments for her condition over the years, her COPD has continued to
worsen, and she has now reached a point where her doctors have determined that
there are no more viable treatment options available. They have explained that
her condition will ultimately lead to her death, and they have suggested that
she and her family begin to think about her end-of-life care.
Rahimah has expressed to
her doctors and family that she does not want to prolong her suffering any
further, and she has decided to elect hospice care. Hospice care is a form of
palliative care that provides comfort and pain relief to patients who are dying,
and it often involves the withdrawal of life-preservation interventions such as
intubation or resuscitation. Ms. Rahimah's decision to elect hospice care
reflects her desire to prioritize comfort and quality of life overextending her
life at all costs.
While Ms. Rahimah's decision may be a difficult one for some family members to understand, it is ultimately her right to self-determination, as she is entitled to make decisions about her healthcare based on her values and preferences. Her decision is an example of the importance of open and honest discussions about end-of-life care and the role that patients, families, and healthcare professionals play in these discussions. By taking an approach to end-of-life care, we can help patients and families make informed decisions that prioritize comfort, dignity, and quality of life.
End-of-life decisions are complex and require careful consideration of the patient's preferences and values. The case of Ms. Rahimah illustrates the importance of respecting a patient's autonomy in making these decisions, and providing care that prioritizes comfort, relief from suffering, and an increase in quality of life.
Autonomy is a fundamental principle in ethics and is especially important in end-of-life care. It involves allowing a patient to make their own healthcare decisions, including decisions about their end-of-life care. By treating a patient as autonomous person, we respect their dignity and agency, and we help to ensure that their values and preferences are considered in care planning.
In the case of Ms. Rahimah, it was important to respect her autonomy in making her decision to elect hospice care. She had the right to make this decision, and it was not appropriate for others to impose their own beliefs or values on her. Healthcare professionals should provide information, support, and guidance to help patients make informed decisions, but they should not pressure patients to choose a particular course of care.
Aside from respecting autonomy, it is also important to provide care that is non-maleficent or that does not cause harm. Hospice care is designed to provide comfort and relief from suffering, rather than to prolong life at all costs. Healthcare professionals should ensure that they are not providing treatments or interventions that could cause harm or prolong suffering and should instead focus on providing palliative care that addresses the patient's needs and aims to improve their quality of life.
In addition to non-maleficence, it is also important to provide care that is beneficial or that brings about good. End-of-life care should not only be about avoiding harm but should also be about providing benefits to the patient, such as relief from pain and distress, and an increase in their quality of life. Palliative care is designed to do just that, and healthcare professionals should take a holistic approach to care that addresses the patient's physical, emotional, and spiritual needs.
Finally, justice is a principle that requires individuals to be treated fairly and equitably and not be subjected to discrimination or bias. In the case of Ms. Jones, it is important that healthcare professionals do not discriminate against her based on her age, or gender.
3. Case Study 3
John Anderson, a 68-year-old man, has been living with end-stage heart failure for the past two years. Current Condition severe shortness of breath, fluid retention, declining organ function. Despite various medical interventions, his condition has progressively worsened. John's heart function has significantly declined, leading to severe shortness of breath and fluid retention. He is frequently hospitalized for complications related to his heart failure. The medical team believes that John is approaching the end stages of his illness.
Ethical Dilemma:
John's family and
healthcare providers are facing an ethical dilemma regarding end-of-life
decisions. John's condition is unlikely to improve, and his quality of life is
greatly compromised. The medical team and family members have different
opinions on the best course of action. Some family members advocate for
continuing
aggressive interventions, while others believe that
focusing on comfort care and ensuring a peaceful end is more appropriate.
Options Considered:
Continuation of Aggressive Interventions:
Continue with advanced
medical treatments, such as cardiac interventions, mechanical circulatory
support, or transplantation, with the goal of extending John's life. Engage in
ongoing discussions with the medical team to assess the potential benefits, risks,
and burdens of these interventions. Understanding these factors will help John
and his loved ones make informed decisions regarding the continuation of
aggressive treatments. Ensure that John's goals and preferences are considered
in the decision-making process.
Transition to Palliative Care and Symptom Management:
Transitioning to palliative
care signifies a shift in the treatment approach, placing emphasis on improving
John's quality of life. Instead of pursuing aggressive interventions, the focus
now shifts to providing holistic care that addresses his physical, emotional,
and spiritual well-being. Palliative care aims to alleviate symptoms, manage
pain, and enhance overall comfort, allowing John to make the most of his
remaining time. Symptom management is a vital aspect of palliative care.
Medications are commonly used to alleviate symptoms such as pain, nausea,
anxiety, and shortness of breath. The palliative care team, in collaboration
with John, will develop an individualized plan tailored to his specific needs.
This approach ensures that medication regimens are optimized, providing
effective relief while minimizing potential side effects. Shortness of breath
is a distressing symptom often experienced by individuals with advanced medical
conditions. In palliative care, oxygen therapy and non-invasive ventilation can
significantly improve John's breathing and enhance his comfort. These
interventions aim to alleviate breathlessness, allowing him to engage in
activities that bring joy and maintain a sense of independence.
Shared Decision-Making and Advance Care Planning:
Shared decision-making is crucial in the continuation of aggressive interventions. It involves collaboration between John, his family, and the medical team. By providing comprehensive information about the available treatment options, their potential outcomes, and associated risks, the medical team can empower John and his family to actively participate in the decision-making process. This collaborative approach ensures that the final decision aligns with John's values, preferences, and long-term goals.
4. Conclusion
From the case study presented, there are 3 prong conflicts that can be observed regarding decision-making for end-of-life care; the patient’s advocate vs healthcare worker, the patient vs her family member, and the patient’s family member vs the healthcare worker.
In this dire situation,
everyone involved does have their best intention at heart, aiming for the best
outcome for the patient, but when it concerning the end of life care, the
willingness to participate in the conversation is varied, both for the patient’s
themself and their relatives as it is emotionally challenging (Gjerberg, E. et
al, 2015) and it poses communication challenge even with the healthcare
provider (Naomi, R. et al. 2016). Adding the weight of the situation is when
the patient can’t exercise their autonomy, the responsibility to make the
decision will fall onto their legal next-of-kin, as this has always been part
of hospital policies.
However, many of the
patient’s relatives did not really know what the patient’s needs were, despite
the patient’s belief in them (Georg Bollig et al. 2016).
Since all the case studies
happen in hospital settings and involve palliative care, referring to
Palliative Care Services Operational Policy 2010 by the Ministry of Health
(MOH) is essential as it provides ethical guidelines for handling the
situation. As palliative care is generally a new medical specialty recognized
by MOH in 2005, another guideline that can be helpful to assist in the
decision-making for the professional parties is Handbook in Palliative Medicine
in Malaysia, developed in 2015. The reasons this was emphasized was that this
policy and handbook can assist in making better solutions for the case studies,
as it is coherence with Principal A: Beneficence and Non-Maleficence, of APA
General Principle (2010) when the psychologists' scientific and professional
judgments and actions may affect the lives of others, they need to be alert and
guarded against personal, financial, social, organizational, or political
factors that might lead to misuse of their influence.
According to the policy,
effective communication skills are essential tools in palliative care and
healthcare providers must develop these skills, including effective listening,
providing information, facilitating decision making and coordinating care among
the patient, family, and other healthcare providers, as this has proven to
better prepare the patient for their final outcome and reduce moral distress
for their relatives (Georg Bollig et al. 2016). This provision is aligned with
Principle E: Respect for People's Rights and Dignity, of APA General Principle
(2010), where individual differences are respected and taking these differences
into consideration when working with others.
Managing end-of-life care
decision’s making can also be guided by the Resolution on Palliative Care and
End-of-life Issues, adopted by the APA Council of Representatives, which
“endorses the principles that care for individuals with advanced serious illness
should be comprehensive, high quality, integrated, interdisciplinary,
patient-centered and family oriented, coordinated across all providers and
settings; accessible, and available through governmental and private health
insurers and care delivery programs. Individuals should have the opportunity to
engage in conversations about their health care, the results of which should be
incorporated into ongoing care plans.” (2017, para 74).
5. Reference
- American Psychological Association (2017) Ethical Principles of Psychologists and Code of Conduct from https://www.apa.org/ethics/code?item=7#405
- American Psychological Association (2017) Resolution on Palliative Care and End-of-life Issues from https://www.apa.org/about/policy/palliative-care-eol
- eorg Bollig, Eva Gjengedal and Jan Henrik Rosland (2016) They know! —Do they? A qualitative study of residents and relatives’ views on advance care planning, end-of-life care, and decision-making in nursing homes. Palliative Medicine Vol. 30(5) 456–470 DOI: 10.1177/0269216315605753
- Gjerberg, E., Lillemoen, L., Førde, R. et al. (2015) End-of-life care communications and shared decision-making in Norwegian nursing homes - experiences and perspectives of patients and relatives. BMC Geriatric 15 https://doi.org/10.1186/s12877-015-0096-y
- Naomi R. George, Jennifer Kryworuchko, Katherine M. et al. (2016) Shared Decision Making to Support the Provision of Palliative and End-of-Life Care in the Emergency Department: A Consensus Statement and Research Agenda. Academic Emergency Medicine https://doi.org/10.1111/acem.13083
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- American Heart Association. (2017). Shared Decision-Making in Advanced Heart Failure: A Scientific Statement from the American Heart Association. Circulation: Heart Failure, 10(9), e000025.
- National Hospice and Palliative Care Organization. (2021). What is Palliative Care? Retrieved from https://www.nhpco.org/patients-and-caregivers/palliative-care/.
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