Decisions to commit patients to palliative care are made by doctors, the interprofessional team (IPT), and substitute decision-makers (SDM) without adequate involvement of the patients themselves due to their loss of capacity to make those decisions. Strangely, nurses are also, in many cases, cut out of the decision-making link, creating a slew of ethical and professional problems for nurses as patients’ advocates and caregivers. The presentation illustrates a case in which a change in the care plan for a patient was made contrary to what a newly-graduated RN thought represented the true wishes of the patient.
Palliative Care Nursing – Its Currency
• The demand for hospice palliative care in Canada is increasing. About 160,000 Canadians need palliative care each year, and only about 5% and their families are able to get these services (Brown & Sanazaro, 2006).
• The Canadian Hospice Palliative Care Association, (CHPCA, 2007), estimates that about 62% of annual deaths in Canada requires access to hospice palliative care services and forecasts that demand for hospice palliative care services will increase over the next 40 years.
• CHPCA (2002) There is a lack of uniformity and consistency in the delivery of palliative care and states finds that “existing programs are not comprehensive, and are unable to address all of the issues faced by patients and families” (CHPCA, 2002).
CNA and Palliative Care Nursing
Aware of the increasing need for specialized knowledge and skill to provide nursing care for clients and families requiring palliative care services, the CNA has recognized hospice palliative care nursing as an advanced practice that require the passing of examinations and certification. The explosion in demand for palliative care services require that nurses pay extra vigilance and diligence in protecting their clients from harm.
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Case Scenario: A Representation of Palliative Nursing Practice Issue
Midway through the morning of the fourth day of providing care for Mr. X, a 57-year old male admitted with metastasized rectal cancer, Akua, a newly graduated RN, was informed by the attending physician that the provision of oxygen by nasal prong or face mask was to be discontinued and only oral suctioning using the Yankauer would be allowed.
In addition, all forms of feeding were to be discontinued. The doctor said the client’s family had given consent to this new plan of treatment. Akua knew that the revised plan of care meant a slow death for a patient that looked so much like her father and with whom she had spent lunch breaks reading stories about hope. Her initial thoughts, when she saw the physician disconnect the feeding tube and the oxygen apparatus himself was to protest, but she was afraid to do so.
“The end of life is a sacred time in every human culture, a final opportunity to promote and experience spiritual growth. However, spiritual work is difficult, if not impossible, when in pain, and when short of breath. Palliative care can provide an environment of comfort, healing, and affirmation near the end of life, something that is deeply appreciated by patients and their families, as well as the entire health care team.” (Clary& Lawson, 2009)
End-of-Life Care
Palliative care aims to relieve suffering and improve the quality of living and dying. Thus, nurses must provide relief from pain and other distressing symptoms, affirm life and regard dying as a normal process, neither hasten nor postpone death, integrate psychological and spiritual aspects of client care, offer support system to help clients live as actively as possible until death, offer a support system to help families cope during the client’s illness and their own bereavement, and enhance the quality of life (Brown & Sanazaro, 2006).
It involves symptom control, such as the common symptom of dyspnea, which can be managed by maximizing client’s oxygenation though providing oxygen, positioning patients upright, maintaining a patent airway, and reducing anxiety or fever. It also involves maintaining dignity and self-esteem, which is shown when nurses respect the person as a whole with feelings, accomplishments, and passions that are separate from the illness experience. In addition, knowing clients helps to facilitate client’s decision-makig and autonomy in choosing therapies (Brown & Sanazaro, 2006).
Systematic Review
A systematic review of the literature on the accuracy of the prediction of dying patients’ preferences by Substitute Decision Makers (SDM) was done by Shalowitz, DI and Wendler, D. (2006) using Pubmed, the Cochrane Library and manuscript references. 16 eligible studies involving 151 hypothetical scenarios and 2595 surrogate-patient were considered. 19 526 patient-surrogate responses were thus considered.
The studies find that, overall, substitute decision makers predicted patients treatment preferences with 68% accuracy
Thus, in one-third of all cases, SDMs’ decisions did not represent the wishes of the dying
The Presentation Addresses the Following End-of-Life Care Issues
• End-of-life care issues
• Euthanasia in Canada
• Nurse Advocacy for Patients
• Ethical implications for the nurse
• The nurse’s role in End-of-Life care
• Disagreeing with the plan of care
• Refusing the assignment and discontinuing nursing service
• Client and nurse grieving
Key Dilemmas Faced in End-of-Life Care (Kerba, 2002)
Patients’ decision-making capacity and right to refuse treatment
Does withholding and withdrawing life sustaining treatment, including nutrition and hydration, provide the dying with comfort?
What about the ethics of pain management?
Who is best qualified to make resuscitation decisions
The issues of medical futility and assisted suicide.
The Essential Steps for the Nurse
• Clarify own ethical positions relating to end-of-life, euthanasia, culture, religion
• Research and understand current legislation relevant to treatment and end-of-life care (CNO, 2009c)
• Review institutional policy relating to palliative care
• Verify MD and Inter-Professional team order
• Review client chart to assure self of existence of advance directive, properly executed consent and DNR forms
• Determine propriety of substitute decision-making process
• Is Plan of treatment appropriate?
Knowing Client’s End-of-Life Wishes
• From client’s verbal or non-verbal direct instructions
• From client’s advance directive, e.g. Living will, power of attorney for personal care
• If client is incapable, from substitute decision-maker’s instructions
• Documented instructions from another member of the healthcare team
• In the case where the nurse is involved, this is possible if the nurse is able to form a trusting relationship with the client or the family
In the preceding case, the nurse was able to ascertain that the wishes of the client and the orders of the MD were not in sync.
Person’s who May Give or Refuse Consent under the Health Care Consent Act, 1996 (1996, c. 2, Sched. A, s. 20 (1)).
1. The incapable person’s guardian, if the guardian has authority to give or refuse consent to the treatment.
2. The incapable person’s attorney for personal care, if the power of attorney confers authority to give or refuse consent to the treatment.
3. The incapable person’s representative appointed by the Board under section 33, if the representative has authority to give or refuse consent to the treatment.
4. The incapable person’s spouse or partner.
5. A child or parent of the incapable person, or a children’s aid society or other person who is lawfully entitled to give or refuse consent to the treatment in the place of the parent. This paragraph does not include a parent who has only a right of access. If a children’s aid society or other person is lawfully entitled to give or refuse consent to the treatment in the place of the parent, this paragraph does not include the parent.
6. A parent of the incapable person who has only a right of access
7. A brother or sister of the incapable person
8. Any other relative of the incapable person.
Ethical Issues Confronting Nurse (Oberle & Raffin, 2008)
• Does she have moral Agency – Is nurse able to act on her moral beliefs relating to care of the dying?
• May be in Moral Distress – Nurse definitely feels that the should be provided with minimum oxygen, feeding, and suctioning but is constrained
• May be experiencing Ethical Uncertainty – Nurse has a feeling that something is missing in the revised plan of care but is not sure what it definitely is
• Ethical Dilemma – The nurse has to choose between the two mutually exclusive ethical issues of promoting the pt’s comfort by: (1) Continuing to feed, oxygenate, and suction her, OR (2) Not continuing her pt’s suffering by depriving her of basic feeding, oxygenation and suctioning
• Nurse may use an ethical decision making framework such as that by Oberle & Raffin (2008)
The nurse has to work within the interdisciplinary team and according to nursing’s scope of practice. Regardless of what the nurse believes is the correct course of action, she cannot act on her own to carry out orders that are not nursing’s specific interventions and is required to get the necessary staff to write orders, which is then incorporated into the care plan. Because nurses do not have much power to act on their own in the interdisciplinary team, advocacy becomes very important in ensuring the care plan follows patients’ wishes.
Ethical issues can also arise when family members are unprepared for the decision-making role, and when family members do not understand the biomedical choices and treatments presented to them. Nurses are often in the middle as they attempt to comply with medical directives and simultaneously protect and advocate for their patients (Robichaux & Clark, 2006).
Ethical Decision Making Framework (Oberle & Raffin, 2008)
• Step 1 – Assess the Ethics of the Situation: Identify the Relationships, Goals, Beliefs and Values in the situation. What is happening here?
• Step 2 – Reflect on and Review Potential Actions: Recognize available choices and determine how these choices are valued. What could I do?
• Step 3 – Select an Ethical Action: Maximize Good. What should I do? Which action will provide the maximum good?
• Step 4 – Engaging in ethical action: What will I do?
• Step 5 – Reflecting on and reviewing the ethical action. What did I do?
Current Legislation Regarding End of Life
• Euthanasia – knowingly and intentionally participating in ending a person’s life to relieve pain and suffering
• Canadian Criminal Code distinguishes between active euthanasia and passive euthanasia
• Active Euthanasia – knowingly and intentionally participating in ending a person’s life to relive pain and suffering. Is criminal and forbidden
• Passive euthanasia – includes starvation, dehydration, or withholding life-preserving procedures (Healthcare consent Act, 1996)
• Suicide not a crime in Canada but physician-assisted suicide is (Criminal Code of Canada, Section 241b)
Euthanasia and End-of-Life Care in Canada
• The Canadian Medical Association states it is not up to doctors to decide on the issue of euthanasia but the responsibility of society
• The CMA forbids Canadian physicians from participating in euthanasia and assisted suicide (CMA, 1998).
In determining the appropriateness of the physician’s order:
The nurse must determine if Canadian laws relating to euthanasia were broken. In the presenting case, one might argue that the change in the care plan could be passive euthanasia. It becomes important to distinguish life preserving actions from comfort measures in palliative care. From clinical experiences, patients often are NPO as they refuse meals. Often times, patients experience decreased appetite, and sometimes there will be orders for maintenance IV fluid for hydration purposes. Discontinuing the g-feed may be an appropriate decision if it is determined to be what the patient would want, but continuing the g-feed could help prolong the patient’s life. However, endotracheal suctioning and maintenance oxygen therapy are not so life-preserving measures as they are comfort measures in this case and likely will not change the clinical outcome. Passive euthanasia if not according to the patient’s wishes is unethical and could be considered clinical negligence.
The Nurse’s Options
The following options are available if the nurse has reason to believe that:
• Active euthanasia is occurring
• The plan of care conflict with the expressed wishes (verbal or non-verbal) of the client
• There are doubts about the substitute decision-maker
Options
• Disagree with revised plan of care and advocate for the patient
• Refuse to discontinue nursing service
• Report to the police
Nurses’ Role in End-of-Life Care (CNO, 2009c)
• Must provide clients and families with support at end of their lives or in making decisions about end-of-life care
• Must engage in active communication with client and members of the inter-professional team about care goals and treatment options
• Must facilitate the implementation of client’s wishes about treatment and end-of-life care
• Knowing and understanding current legislation relevant to treatment and end-of-life care
• Must not be involved in euthanasia and assisted suicide
• Assess if client has sufficient and relevant decision about treatment and end-of-life care
• Provide opportunity to discuss, identify, review client’s wishes
• Be involved in client and family discussions about treatment and/or end-of-life care
• Consult with healthcare team to identify and resolve treatment and end-of-life care options
• Must have/obtain knowledge of pt’s end of life wishes
• Explain client’s end-of-life wishes to interprofessional team
• Nurse must maintain records of all client and interprofessional team communications
• Must be advocates for the creation or modification of institutional-setting policies and procedures relating to end-of-life choices and care
In the case, the novice nurse clearly did not advocate for the patient
Theoretical Framework For Patient Advocacy
• In the novice to expert process, Benner provides a framework in which nurses can move towards becoming effective patient advocates
• The first step towards integrating the behaviour of advocacy is to develop a reasoning-in-transition from curative therapies to end-of-life nursing care
• Fig 1 is a conceptual model of advocacy behaviours proposed by Benner (1999).
The trigger experience for advocacy is the hospitalization that occurs for the patient. Thus, behaviours of helping, teaching, monitoring functions, managing changing situations effectively, medication administration and monitoring as well as roles of the nurse are all requirements for advocacy, which depicts the essence of nursing.
Barriers to Practicing Advocacy in End-of-Life Nursing Care (Thacker, 2008)
• The Physician
• The Clients family
• Fear
• Lack of Communication
• Lack of Knowledge
• Lack of Time
• Lack of Hospital Support
• Novice nurses reported that lack of communication and lack of time and or support served as barriers to their practice
Disagreeing with the Plan of Care for Patient (CNO, 2009a)
• Consult with nursing colleagues, experts, etc. to verify concern
• Discuss with healthcare provider
• Discuss with manager to gain support or clarify concern
• Follow agency policy to discuss disagreement with plan with identified higher authority
• Inform healthcare provider of decision not to implement
• Document concerns and steps taken to resolve the issue
Refusing the Assignment and Discontinuing Nursing Service – The Challenges (CNO, 2009b)
• Nurse accountable for providing, facilitating, advocating, and promoting best possible care for clients
• Nurses must always put the needs and wishes of clients first
• Refusal/discontinuation of assignment may be construed by the CNO as professional misconduct and nurse subject to sanctions
When Can Nurses Refuse an Assignment or Discontinue Service (CNO, 2009c)
• When nurse does not have the competency for the assigned task
• When nurse’s personal beliefs and values are so pervasive that they preclude nurse from providing safe, competent and ethical care
• When the nurse or the client will be subjected to an unacceptable level of risk
• When asked to do extra shifts or overtime for which she is not contracted
• When client requests discontinuation
Before a Nurse can Withdraw Services (CNO, 2009c)
• Communicate with employer and obtain agreement
• Obtain client’s permission
• Request for alternative or replacement services to be arranged
• Give client reasonable opportunity to arrange alternative or replacement services
• Nurse must continue providing services until a replacement care provides commences care
Grieving (Arnold & Boggs, 2003, p. 193)
• Nurse must assist family in the grieving process
• Anticipated grieving can be provided by informing family about what to expect as regarding the intensity and unpredictability of grief
• Educate family that the grief experience can lead them to question their own mental stability
• Encourage family to talk about deceased
• Nurse must be afforded time off and other opportunities to grieve
So how would such knowledge inform possible solutions to help the novice nurse in the presenting case scenario?
Nurse as Patient Advocate and Ethical Decision-Making
Within the nurse-client relationship, client’s rights encompass high quality hospital care, participation in treatment decisions, full information disclosure, and protection of client privacy (Arnold & Boggs, 2007). The nurse helps to respect, protect and enforce these rights through advocating for clients in all aspects of healthcare. The client advocate protects client’s rights to self-determination, motivate clients and families to become informed, active participants in their healthcare, mediate between client and others in the healthcare environment, and act as client agent in coordinating effective health care services (Arnold & Boggs, 2007).
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The nurse demonstrates leadership through “advocating for clients” and collaborating with patients and the interdisciplinary team “to provide professional practice that respects the rights of clients” (CNO, 2002). The CNA (2002) code of ethics stipulates that nurses must provide dignified care through respecting each client’s worth and advocating for the respectful treatment of all persons. The RNAO (2006) also promote client centered care through respecting clients and their wishes, values and priorities, providing human dignity, recognizing clients as experts and leaders in their own lives, and allowing client’s goals to coordinate the care of the healthcare team.
The aim of palliative care is to render comfort, promote the best quality of life, and to relieve suffering. According to the scenario, Mr X’s family had requested that the PEG feeding and oxygen be disconnected and thus the wishes and autonomy of the family will be respected and duties carried out as deem necessary. The CNO (2009) Ethics Standard of Care states that “clients know the context in which they live and their own beliefs and values”. When competent client and their family make a choice, the nurse assumes the role of supporting the client’s autonomy, informed choices and rights. The RNAO also states that “at a practical level, client centered care means nurses listening to the needs of patients and respecting their autonomy” (RNAO, 2006, p.1). Thus, Akua should look intensely at the family’s request to discontinue all interventions and to support the family’s informed choices and decision making in efforts to support the clients and respect their wishes. Miteff (2001) holds that “autonomy values and respects personal freedom, and allowing the dying patient to make informed choices, gives the patient control and dignity at the end of life.” In this case, the family of Mr. X’s family will feel that their decision making is respected and carried out if nurses render their support and duties in accordance to their choice of intervention for their beloved one.
However, according to Beyea (2005), “nurses often serve as advocates for patients because of their vulnerability” (Beyea, 2005). Advocating for patients and their families is one of the most important roles of nurses whether caring for patients in the community or in a health care institution. Thus, Akua should advocate for Mr X, because he is very vulnerable. It is important for Akua to review the patients chart and the do not resuscitate order (DNR) so as to clarify whether Mr. X’s decision not to continue treatment is respected or if he is not in a position then the wishes of the SDM are being enforced. Akua can confirm the types of treatment options patients wish to have when they become incapacitated. The types of medical treatments that patients can accept or reject are artificial feeding and hydration, cardiopulmonary resuscitation (CPR), mechanical breathing/respiration, major surgery, kidney dialysis, chemotherapy and invasive diagnostic tests (Canadian Legal Forms Limited, 2001). The specific wishes to have an autopsy can also be included in an advanced directive.
In the case, the nurse, therefore, has a professional and ethical obligation to protect the client’s rights. To advocate for the patient, the role of an educator also becomes important. The nurse must provide care that respects human dignity, and while the patient is palliative it does mean ensuring as much comfort as possible. The nurse needs to educate the family and SDM about the difference between life-prolonging interventions and comfort measures. The nurse must remain self-aware and unbiased to communicate effectively, but it is important to outline to both the family and the physician the importance of endotracheal suctioning to clear secretions and the provision of maintenance oxygen to help the client breathes comfortably. Without such comfort measures, the patient would have difficulty breathing and being unable to clear mucous secretions would not allow the patient a dignified and peaceful death.
Through using principles from nursing theory, such as Watson’s transpersonal caring relationship, the nurse can be with the patient and family and experience their condition of being to be able to interact effectively with the family and to provide the best care for the patient. As the primary health-care provider in direct contact with the patient, family and other health professionals, the nurse is in a key position to understand the views and motives behind the patient’s desires as expressed in a DNR order or will, family’s wishes, and the physician’s decision to discontinue the comfort measures. It is important to note that families/SDMs may not understand that the oxygen and suctioning provide comfort for the patient, and that their decision may be driven by personal motives and not necessarily what they believe the patient would want.
The physician may have also acted in the best interest of the organization by discontinuing the therapies to save resources, which he may view as unnecessary for the dying patient. Thus, the nurse is important to advocate for what is in the patient’s best interest and for bridging any gaps between the client’s needs and the care plan. Arnold & Boggs (2007) holds that potential sources of nurse-doctor conflicts are power differences where doctors are perceived as authority figures and nurses’ feelings or opinions are discounted, and requesting that nurses act towards patients in a manner that conflicts with their personal values, which may be unsafe or irresponsible, as well as lack of collaboration and trust. Lindeke & Sieckert (2005) suggests that “collaboration between physicians and nurses is rewarding when responsibility for patient well-being is shared.” It appears that Akua and the doctor may share different views on how best to care for the patient. However, the nurse must also ensure arguments are based on clinical rational and remain self-aware, unbiased and non-judgmental in order to communicate effectively in practice. In a survey conducted by Rosenstein & O’Daniel (2005) disruptive behaviors among nurses (causing conflict) were reported almost as frequently as physicians. So the novice nurse has to keep emotions in check in order to be an effective patient advocate.
If there is no specified SDM and the family wants the doctor to still discontinue the treatments, the nurse still has an ethical obligation to provide the best care to the patient. There becomes an ethical dilemma about advocating for the doctor to order continue the comfort measures despite family member’s objection. If a DNR order does not stipulate which treatments to provide if the patient is incapable of participating in decision-making, to what extent is the healthcare team obligated to respect the family’s wishes as an extension of the patient, recognizing that they know the patient best? The nurse would have to consider factors such as who can consent to treatment as outlined above. Also, using principles from nursing theory would allow the nurse to have a better understanding of the dynamics involved in decision-making.
By confirming the patient’s wishes and/or surrogate’s decision on Mr. X’s health, Akua will be advocating for the patient best interests. Akua should ensure that Mr. X will continue to be comfortable as his death seems imminent. Akua should ensure that the family spends as much time as possible with the patient. Akua should provide presence to the patient and his family, therapeutic touch if appropriate and meet their basic needs. By doing this, Akua will be practicing in line with Parse’s theory of respecting Mr. X’s autonomy as well as Watson caring theory of being with the patient and his family. However, if the nurse feels she is not providing ethical care, she may also be able to withdraw herself from the case as outlined above.
Conclusions & Implications
The demand for palliative care nursing is bound to increase as the population ages and chronic diseases increase. The potential for “slippery road” phenomenon always exist that doctors and substitute decision makers will rush to commit patients to palliative care contrary to what patients would prefer. Involving nurses at every stage of the end-of-life decision-making process is one of the ways to avoid this slippery road from gaining becoming an issue of notoriety.
Implications for New Graduates
• Palliative care nursing are especially hard on newly graduated nurses, emotionally and physically.
• Acquiring knowledge of institutional policies, communicating with nursing colleagues and the interprofessional team if practical way of obtaining knowledge of end of life issues
• Timely and appropriate documentation of clients’ wishes serve as a useful advocacy tool
• Newly graduated RNs should consider obtaining the CNA Hospice and Palliative Care certification to equip them with the skills to care for palliative care patients.
WIKI Discussion Questions
1) In our case scenario, what do you consider as the best course of action for nurse Akua?
2) Discuss the differences in the nursing care of palliative care patients and those on DNR code
3) How can newly graduated RNs best provide the comfort and safety of patients on palliative care?
4) Discuss the above issues in palliative care as it relates to the case in the following link. Critically reflect on what actions could the nurses have taken to advocate for the patient and his wife? How would you approach dealing with such situations as a novice nurse caring for your patient?
Link: http://www.youtube.com/watch?v=It22yZ8MYEI?
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