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In this course we will discuss some of the major considerations all nurses should be aware of when providing end-of-life care. This course is specific to geriatric patients but can be applied to patients of any age in any setting, as many of the principles remain the same.

What is End of Life Care? 

End of life nursing care encompasses a wide range of aspects of care, to include symptom management, appropriate pain management, ensuring patient and family education and support during the death and dying process, providing culturally sensitive care, and ensuring the decision-making process remains ethical (6). Nurses are an integral part of the end of life process and should be sure to be an active advocate for their patients and families. 

End of Life Care vs. Palliative Care 

End of life care and palliative care are two terms that are used interchangeably, but are two very different things. Palliative care refers to pain and symptom management during “any time in the trajectory of serious illness or injury and does not replace curative interventions” (8). This means that anyone experiencing a serious illness or injury can receive palliative care to manage symptoms, and doesn’t necessarily mean that they are beginning the dying process. Palliative care can be delivered as either a separate service or the primary care team, and can be given in a variety of settings to include intensive care, inpatient wards, outpatient clinics, and long term care or rehabilitation facilities. In contrast, end of life care (also known as hospice care) refers to patient care before and during the dying process. It may be initiated before, during or after curative treatment and is meant to focus on a patient’s comfort rather than a cure (8). End of life care can be provided in the comfort of the patient’s home, in a long term care facility, or in a hospital. 

End of Life Care Considerations 

End of life care should be given to anyone who is “near the end of life and have stopped treatment to cure or control their disease” (13). It can also be considered for those who are undergoing a curative treatment. 

Talking frankly about end of life care planning is important, and should be done often in collaboration with patients and their families. Nurses should be active in this planning phase, ensuring that the patient and all involved family members understand the death and dying process, all available treatment options that have been presented by the health care team, and all the different methods available to control pain and symptoms. Talking about end of life options early is imperative – by broaching the subject before pain and symptom management become an issue, the nurse can ensure that the patient is an active participant in creating their care plan and final wishes.

Types of End of Life Care

End of life care planning can include a few different things: 

Hospice Care

As was mentioned above, hospice care focuses on pain and symptom management during a chronic illness that will ultimately cause the patient to die. Also known as “comfort care,” hospice can be initiated in several instances: 

• During a curative treatment 
• If a patient wishes not to continue with curative treatment 
• The curative treatment has failed 
• The patient wishes not to pursue curative treatment 
• After withdrawal of lifesaving interventions (ventilatory support, vasopressors, etc.) 

Do Not Resuscitate (DNR)/Do Not Intubate (DNI)

A patient has the right to refuse resuscitation or intubation and mechanical ventilation in the event that they would need it, if they are of sound mind and are able to make their own medical decisions. A Do Not Resuscitate (DNR) order is written by a medical doctor and instructs the health care team not to initiate cardiopulmonary resuscitation (CPR) if the patient experiences a cardiac or respiratory arrest. The order is written only after discussion with the patient. If the patient is not able to make medical decisions, a doctor may discuss options with a designated healthcare proxy. A DNR order does not cover any other lifesaving interventions. A Do Not Intubate (DNI) order is also written by a doctor and states that a patient does not wish to have an artificial airway placed should they experience respiratory arrest. It is possible for a patient to be a DNI but still wish to have CPR in the case of cardiac arrest (9). 

Once a DNR/DNI order is in place, if it is at the patient’s request, the family cannot override it. If a patient has requested a DNR/DNI order but then changes their mind, they have the right to revoke it at any time. A DNR/DNI order must be respected, it is a legal, binding document. As such, verbal DNR/DNI requests from family members cannot be honored – the original signed order must be present for care providers to cease resuscitation attempts. 

Advance Directive

An advance healthcare directive, also known as a living will, is a legal document that specifies what a person’s desires are regarding treatments and lifesaving interventions in the event that they become unconscious or are dying (9). A living will can include instructions on: 

• The use of ventilators or other artificial respiratory support 
• Initiation of CPR in the event of cardiac arrest 
• The use of vasoactive medications 
• Dialysis 
• Organ or tissue donation 

The advance directive may also name a health care proxy can make decisions for the patient if they become incapacitated. 

In order to facilitate advance directive planning, nurses may wish to use a document called “5 Wishes.” 5 Wishes is a legal advance directive document that is written in lay language, and helps patients to choose their end of life care and document it appropriately. This document is widely available in hospitals and other care facilities.

The Role of the Nurse in End of Life Planning 

According to the position statement on end of life care from the American Nurses’ Association, nurses “are often ideally positioned to contribute to conversations about end of life care and decisions, including maintaining a focus on patients’ preferences, and to establish mechanisms to respect the patient’s autonomy” (7). Similarly, a statement entitled “The Right to Self Determination” from the Code of Ethics for Nurses with Interpretive Statements also emphasizes the nurse’s role in end of life planning and care: 

“The importance of carefully considered decisions regarding resuscitation status, withholding and with-drawing life-sustaining therapies, forgoing nutrition and hydration, palliative care, and advance directives is widely recognized. Nurses assist patients as necessary with these decisions. Nurses should promote advance care planning conversations and must be knowledgeable about the benefits and limits of various advance directive documents. The nurse should provide interventions to relieve pain and other symptoms in the dying process consistent with palliative care standards and may not act with the sole intent of ending a patient’s life” (7). 

What these statements say is that nurses have ethical roles and responsibilities that are fundamental to nursing practice. Nurses should ensure that both patients and family members understand the options and treatments that have been presented to them, and should ensure that the patient’s autonomy is being respected throughout all aspects of their care. Nurses are first and foremost patient advocates, and this is especially crucial during the end of life stage. Nurse advocacy during this time can encompass anything from symptom and pain management, culturally sensitive care provision, and ethical decision making (6). 

Talking to Patients and Families 

Talking to a patient and their family about end of life care can be a huge challenge for nurses. In addition to managing patients’ and families’ emotions, nurses must manage their own emotions and approach the subject with professionalism as well as empathy. 

Often, during the end of life planning phase, patients will go through the five stages of grief, as outlined in the book “On Death and Dying” by Elizabeth Kubler-Ross. The five stages of grief include (6): 

• Denial: Usually a temporary defense, patients may say that they’re fine, or that this is some mistake. 
• Anger: Once the patient is no longer in denial, anger is often the next stage. It may be difficult to care for the patient during this stage, as they may misplace their angry feelings on their caregivers. 
• Bargaining: At this stage, the patient seeks ways to postpone death – often in the form of promising to reform a lifestyle in exchange for more life. 
• Depression: This stage may involve the refusal of treatments or visitors, and the disconnection from people, love, and affection. 
• Acceptance: The final stage, which is not reached by all patients. In this stage, the patient has come to terms with their mortality and has accepted that death will happen. 

It is important for the nurse to understand these five stages, as most patients will be experiencing one or more of the stages during the end of life process. 

Here are some helpful techniques for nurses to use when talking to patients about hospice or end of life planning, according to the American Academy of Family Physicians (10): 

Make sure you have time. 

While this may seem impossible while on a shift when you have other patients, it’s imperative that a nurse allow enough time to have this difficult conversation. This is not a conversation that can be rushed – rushing through the conversation may make a nurse miss important details that the patient has shared. 

Turn off your phone. 

Minimizing distractions during these difficult conversations will ensure that the nurse can get ample information from this patient and family interaction. 

Listen to the patient.  

Above all, listen to what the patient is saying. Begin the conversation by asking what the patient and their doctor have already discussed. Be sure that the plan of care has been reviewed with the doctor prior to this conversation, then have the patient repeat their plan of care as they understand it. If there are major differences in the plan of care and what the patient says, this may warrant further conversation with the health care team to clarify and identify knowledge gaps. 

Learn what the patient’s goals are.  

Active listening is crucial during the conversation phase of end of life care planning. Once the nurse has determined that the patient understands the options that have been presented, it is vital to ask them what their goals are for palliative and comfort care. Understanding a patient’s goals can help identify what resources will be best suited for their individual needs. 

Conversations surrounding end of life care should happen as soon as possible. Do not wait until the patient is no longer able to participate in the discussion. Encourage the presence of family members, but be sure to respect the patient’s wishes regarding who is involved in the planning process. Other members of the healthcare team that should be included in the planning process include social workers, patient navigators (if applicable in that setting), and any primary and specialist physicians involved in the patient’s care.  

Caring for an End of Life Patient

Transitioning to End of Life Care

There may come a point during a patient’s hospital stay where it becomes evident that curative or life-supporting measures are no longer effective, thus necessitating the transition from curative treatment to comfort/end of life care. Of course, it is preferable that comfort care be initiated during the curative treatment – this makes the transition to end of life care somewhat easier, since the conversation and planning were ideally initiated before treatment began, and with the collaboration of the healthcare team, family and patient. 

Social Considerations

When preparing a patient and family for the end of life process, a nurse should be sure to consider several social perspectives of both the family and the patient: 

Patient and family education: This is crucial to ensuring that the end of life process goes smoothly for both the patient and any involved family members. It is imperative to assess the patient’s level of understanding of their diagnosis and all treatment plans. If a knowledge gap is identified, consider calling a meeting of the healthcare team to review the plan of care. The nurse should be present at as many planning meetings and patient conversations as possible. This way, the information is getting passed firsthand and nothing is lost in translation. 

Physical location: What are the patient’s wishes for where they want to be when they die? If the patient wishes to leave the hospital, every effort should be made to accommodate their wishes, should their clinical status allow it. At this point, social workers should be involved to coordinate home hospice care or transfer to an appropriate hospice facility. 

Advance directives: If the patient has an advance directive in place, what are their wishes? If the patient can participate in discussions surrounding end of life care, their autonomy should be respected. If the patient wishes to create an advance directive, the nurse should be sure to confirm the patient’s and family’s understanding of available options. 

Clinical Considerations

Medically ineffective interventions: This can also be called “futility of care.”  According to the American Medical Association’s Code of Medical Ethics (11), these interventions may be requested by family members but are deemed inappropriate by the physician. According to the AMA, the following steps should be taken by the physician when dealing with a futility of care situation: 

1. “Discuss with the patient the individual’s goals for care, including desired quality of life, and seek to clarify misunderstandings. Include the patient’s surrogate in the conversation if possible, even when the patient retains decision-making capacity. 

2. Reassure the patient (and/or surrogate) that medically appropriate interventions, including appropriate symptom management, will be provided unless the patient declines particular interventions (or the surrogate does so on behalf of a patient who lacks capacity). 

3. Negotiate a mutually agreed-on plan of care consistent with the patient’s goals and with sound clinical judgment. 

4. Seek assistance from an ethics committee or other appropriate institutional resource if the patient (or surrogate) continues to request care that the physician judges not to be medically appropriate, respecting the patient’s right to appeal when review does not support the request. 

5. Seek to transfer care to another physician or another institution willing to provide the desired care in the rare event that disagreement cannot be resolved through available mechanisms, in keeping with ethics guidance. If transfer is not possible, the physician is under no ethical obligation to offer the intervention.” 

The above steps are not limited to physicians. While nurses cannot make ultimate treatment decisions for the patient, they can ensure that the patient and family understand what the physician has explained. Furthermore, the nurse can act as an advocate for the patient. This kind of advocacy ensures that the patient’s wishes are being respected and that the care they are receiving is ethical. 

How to Prepare a Family for End of Life Care

Physical signs of end of life: When the dying process starts, it is important that the family members present understand what is happening. The following are common signs of the end of life: 

• Increased sleeping 
• Loss of appetite 
• Labored breathing 
• Decreased urine output 
• Confusion 
• Hallucinations 
• Decreased heart rate 
• Irregular breathing patterns (Cheyne Stokes respirations) 

When you’re not a medical professional who has experienced the dying process with a patient, it can be jarring – especially when it’s your family member. Put yourself in the family members’ shoes and explain what is happening. Knowledge can be comforting for most but may not be in every case. Talk to the family members and assess how much they know and how much they would like to know. Be empathetic but do not dance around the subject. Use terms such as “die” instead of “pass away.” Using alternative terms for death and dying may leave it open to interpretation, and in some cases may give family members or patients false hope.  

Family Support 

Along with assessing the patient’s needs, the nurse should also frequently assess the needs of the family. Providing emotional support to the family member of a dying person is incredibly important, both during the dying process and afterwards (12). Be sure to involve social work if you identify any potential need for continued support for the family, i.e. support groups.

Conclusion

Nurses are an integral part of the end of life process, both in the planning and active phases. Among the biggest responsibilities for the nurse during this difficult time is the assessment of understanding of the treatment plan and goals, as well as ensuring that the patient’s autonomy and dignity are respected at all times. The healthcare team should work together as a whole to ensure that the dying process is as comfortable as possible for the patient and their family.

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