End of life decision making is the process that healthcare providers, patients, and patients’ families go through when considering what treatments will or will not be used to treat a life-threatening illness.
Several forms of the end of life decision making are possible. First, advance directives, such as living wills and/or durable power of attorney for healthcare, provide an opportunity for patients to express their preferences in writing before a critical illness occurs. This is the simplest way to make the decision, since it just needs to follow the will of patients.
The second form of end of life decision making centers on resuscitative efforts. These decisions may result in do not resuscitate (DNR) orders and can vary in content; some patients may request no resuscitative efforts, whereas others may wish to have limited efforts, such as medications or defibrillation only, if a cardiac arrest occurs.
The third form of end of life decision making is withholding or withdrawing life-sustaining therapies, such as antibiotic therapy, use of vasopressors, dialysis, administration of fluids and nutritional feedings, and mechanical ventilation.
Although cultural differences exist between acceptance of withholding therapy and acceptance of withdrawing the therapy. Withdrawing therapy is “morally equivalent” to withholding them. Patients’ family members are often asked to consider withholding or withdrawing life-sustaining therapies in the end of life decision making.
When decisions have been made to withhold or withdraw therapies, a decision to pursue “comfort care” may follow. Comfort care is a form of medical care focuses on relieving symptoms and optimizing comfort as patients undergo the dying process.
Comfort care involves discontinuing any diagnostic or therapeutic procedures, such as obtaining blood samples for laboratory tests or physical therapy, that do not contribute to the patient’s comfort, as well as ensuring that adequate amounts of analgesics and sedatives are given to control pain, dyspnea, or other uncomfortable symptoms.
When a patient can no longer benefit from active treatment, comfort care can allow a better quality of life at the end of life. The focus should be on improving end of life care for both patients and their families.
Communication among health care provider, patient, and patient’s family is ultimate importance for the end of life decision making.
Developing trust is one of the first steps in laying the groundwork for end of life decision making. Nurses often quickly develop close, trusting relationships and emotional connections with patients and the patients’ families, because of the intensity of the care and the time the 3 groups spend together.
Nurses serve as patients’ advocates and often as “go-betweens” between patients’ families and physicians, illustrating the trust patients and patients’ families. Trust also develops between patients’ family members and members of the healthcare team when care providers ask about a patient’s life, values, and interests; address conflicts and offer apologies when needed; relate personal experiences; and acknowledge what this decision making means to the patient’s family. In order for families to feel safe and supported in this decision-making process, a relationship of trust is crucial.
Another aspect of this relationship that strongly influences end of life decision making is attending and listening. Attending to the psychosocial effect of this process on patients and their family members lessens long-term adverse effects the process can have on all their lives.
Family members have asked that healthcare providers “stop and listen” to their concerns and requests; stopping and listening helps decrease feelings of guilt and burden for family members when they feel they have been able to speak up for their loved one and have been heard.
Timing and style of communication with patients and patients’ families also play an important role in effectiveness of end of life decision making. Communication with patients and their families needs to happen early and often, without the families having to ask to have the conversation. Delaying difficult conversations increases the burden on patients’ families and increases the moral distress of nurses, because the nurses feel they are causing unnecessary suffering for a patient. Stressed family members may need to have the same conversation several times before they can fully comprehend the information.
Communications should be clear, direct, and honest. Patients’ families want physicians and nurses to be frank and not avoid talking about bad news. Use of the words “death” and “dying” is more helpful to families than use of euphemisms. Positive words, such as “hope” or “better,” without specific details often confuse a patient’s family members and send mixed messages about the patient’s prognosis. Other words to avoid include medical terms, so familiar to nurses’ everyday lives but foreign to patients and patients’ families. Finally, using language that does not put the full weight of responsibility for decision making on patients’ family members helps ease the burden for them. Giving family members the facts and asking, What do you want us to do? is much more difficult for them than is presenting the facts, making recommendations, and then coming to a decision as a group.
Who Participates in End of Life Decision Making?
End of life decision is one the most serious issues in the human life process. There are a series of ethical issues surrounding end of life care. To some extent, everyone of us may face this challenge.
New drugs, devices, and tools are being developed every day to enhance the ability of counteracting or modifying the effects of diseases that, in the past, were surely fatal. These possibilities can be exciting, since the advanced technology and sophisticated interventions may bring cure for patients.
However, in the enthusiasm for technology and cure, patients’ wishes, quality of life, and consideration of the burden of treatment are overlooked. Furthermore, the complexity of situations often makes it difficult to determine patients’ preferences and values with certainty.
Patients have the absolute right to determine what care the patients receive at the end of life. However, because of the severity of patients’ illnesses, patients may not be physically or mentally able to participate.
In many cases, it is apparent that physician, nurses, pharmacists, dieticians, administrators, and the family members need to work together to make the decision. Particularly, family members may act as surrogate decision makers for the patients.
What Is the Process of End of Life Decision Making?
With the exception of advance directives, which patients ideally write before a life-threatening illness occurs, most end of life decision making occurs as a patient is nearing death.
The end of life decision making occurs in a stepwise fashion. Usually, the decision to forego resuscitation (DNR orders) is made first. Late, decisions are made to withhold or withdraw other therapies, such as dialysis, parenteral nutrition, or mechanical ventilation.
Here is the process that patients’ family members go through as the family members make decisions to withdraw life-sustaining therapies. First, family member begin to recognize the futility of a loved one’s situation by asking questions and closely watching care providers for cues to the prognosis of the loved one.
As the family members begin to realize the probable bleak outcome, they move to the next step of coming to terms with the reality of the patient’s suffering and begin to imagine what the patient would want, on the basis of known values or expressed preferences.
Shouldering the surrogate role is the third step and involves the work of taking on the responsibility of making decisions on their loved one’s behalf.
Finally, facing the question of whether to forgo life-sustaining therapies is the last step in making these decisions. Most families moved through these steps in a linear fashion.
Surrogate family decision makers move through a series of steps in making end of life decisions. Understanding the critical illness by seeking information about the irreversible physiological processes that are occurring and developing trust in the healthcare team and the care provided are the first step of the process.
Reviewing the patient’s life and bringing closure to that life story are the second step; this step involves considering the patient’s role in the family, thinking about the patient’s values, and evaluating the patient’s quality of life.
The third step involves taking on the role of surrogate decision maker as a way to maintain family roles and relationships, seeing the surrogate role as a way to continue to act as a responsible, caring family member for the patient and others in the family. This process takes time and allows the family to develop the sense of doing the right thing.
Here is from the point of view of the healthcare team rather than patients’ family members. The first step in the process is laying the groundwork, which is done by building trust and relationship with the patient or the patient’s family members, teaching about the illness, and “planting seeds” related to end of life issues. This step is followed by a step called shifting the picture. In this step, the members of the healthcare team work together to present consistent information to the patient’s family, create new expectations, and change the scope of treatment choices available. Finally, the team helps the family members accept a new picture, by reiterating information, involving other disciplines to assist the family, and helping family members redirect their hope from cure to a comfortable death.
The end of life decision making demands that patients’ families understand and process information, emotions, and responsibilities in order to make choices with which the families feel comfortable.
Factors Associated with Healthcare Providers
Healthcare providers’ past education and experience related to end of life care in general have an effect on the end of life decision making.
Culture is an important factor in end of life decision making. Some countries do not have laws on advance directives or DNR orders, resulting in more difficult decision making in some situations.
A physician’s specialty also influences end of life decision making. surgeons approached end of life decision making differently than did intensivists. Surgeons thought they had made a covenant with the patient to preserve the patient’s life and were more reluctant to forgo lifesaving measures. Intensivists’ perspectives were more global; their considerations included the patient’s quality of life and overall use of healthcare resources.
Factors Associated With Patients and Patients’ Family Members
Patients’ diagnoses and level of acuity play a clear role in the decisions made at the end of life. Diagnoses of multisystem organ failure, severe neurological injury, and end-stage heart failure or respiratory failure are most commonly associated with DNR orders.
Chance of survival and predicted quality of life influence patients’ willingness to undergo care with mechanical ventilation; interestingly, quality of life before hospitalization did not influence patients’ decision making.
Families’ awareness of patients’ preferences, either through written documents such as advance directives or through previous conversations with the patients, clearly influences decisions made by patients’ families and eases the burden of decision making for the families.
How Do Healthcare Providers View End of life Decision Making?
As mentioned, the end of life decision making is the most frequent ethical problem in clinical practice. Physicians write the orders, they often feel a heavy burden of responsibility when making end of life decisions. They ask themselves questions, such as, Who am I to make these decisions?
Nurses acknowledge that physicians have a difficult task and must live with the responsibility for decisions made. Occasionally, nurses report that they often have feelings of dissonance when caring for patients near the end of life and think that treatment was either stopped too soon or continued too long in futility.
Moral distress often results: nurses feel they are contributing to a patient’s suffering without providing any benefit to the patient. Physicians commonly are unaware of the ethical concerns nurses experience in these situations. Although nurses have some awareness of physicians’ ethical dilemmas. The lack of understanding of each others’ perspectives most likely is mutual.
In the process of end of life decision making, nurses see themselves as liaisons between physicians and patients’ families. Nurses serve as “interpreters” for patients’ families, explaining what physicians have said in lay terms. Nurses’ relationships with patients’ families help the nurses perceive what and how much information family members can receive at one time. In this relationship, nurses address the issues raised by physicians in a way and at a pace that patients’ families can understand. Sometimes patients’ families look to nurses for the “real answer” related to prognosis and quality of life for the patients.
How Do Patients and Their Family Members View End of life Decision Making?
It is natural that patients, patients’ family, or surrogate decision makers want to be involved in the process of end of life decision making.
Although patients’ families want to be involved, being involved is not an easy process, and it is fraught with strong emotional reactions. With withdrawal of life-sustaining therapies, stress and guilt were identified as 2 major components of end of life decision making for the families.
After the experience of making a decision to withdraw life-sustaining therapy for a loved one, family members’ stress was extremely high. Family members make these decisions for patients as work that was “overwhelming” and “devastating.” Patients’ families also feel guilt that they selfishly allowed the patients to suffer if decisions were not made or carried out soon enough. In contrast, some family members felt empowered or proud that they were able to honor their loved ones’ wishes.
What Strategies Facilitate End of life Decision Making?
End of life decision making is approached as a last resort, something that was done when death of a patient was imminent, often after the patient was no longer able to participate in making decisions.
This perspective needs to change. Patients want to talk about and be involved in decisions about what will happen at the end of their life. Patients’ family members recommend that issues related to end of life care be brought up early in the course of a life-threatening illness. A proactive approach, identifying patients at high risk for dying and initiating discussions about prognosis and options with the patient’s families, can increase the use of DNR orders and comfort care.
Another perspective that needs to change is how healthcare providers value palliative care. Palliative care is defined as “care that aims to relieve suffering and improve quality of life for patients with a life-threatening illness and their families.” Palliative care is not something that is offered because “there is nothing more we can do”; it is an active, aggressive plan of care designed to alleviate patients’ symptoms and meet the diverse needs of patients and patients’ families.
Unlike hospice care, which requires that patients forgo all curative treatment, palliative care can be offered while patients are still actively seeking cure for a disease condition. As a patient’s disease progresses, however, palliative care can help the patient and his or her family shift their hopes from cure to comfort and peace.
Healthcare providers can also change the way they think about providing palliative care. It is just as important to be expert, skilled, and timely when providing palliative care as it is to know how to provide medications and interventions for a patient in the midst of an acute illness.
Awareness of Meaning for Patients’ Family Members
Healthcare providers deal with life and death issues every day. Patients’ family members, however, may have never faced these issues before, and the memory of this experience will be with them for a lifetime. Family members have described the experience of making end of life decisions for a loved one as “surreal,” “overwhelming,” and “devastating.” Family members are making decisions in the midst of stress, anxiety, and powerful emotions and often need others who know and love the patient to affirm their decisions and may ask for information repeatedly to corroborate their decisions.
The decisions made by patients’ family members will have a long-term impact on the members’ daily lives. Patients have a role in their families, and the patients’ living or dying will change the families forever; how decisions are made can also alter relationships between surviving family members.
End of life decision making is most effective when members of the healthcare team work together in assisting patients and the patients’ families. Trust between team members is crucial in this process.
Collaboration between physicians and nurses when dealing with end of life issues may decrease the moral distress experienced by each group, especially when each group recognizes the unique moral dilemmas that the other group faces in these situations.
The healthcare team, which may include physicians, nurses, social workers, chaplains, and others, needs to communicate a consistent message to patients and the patients’ families in order to best support and facilitate decision making. Implementation of palliative care teams (interdisciplinary teams devoted to supporting patients and their families through life-threatening illnesses or injuries) is one strategy to improve collaboration and coordination of end of life care.
End of life decision making will continue to be a growing need as medical technologies enhance the ability to prolong life.
Communication between patients and their families, between patients and patients’ families and the healthcare team, and between members of the healthcare team—are the key elements that will enhance the end of life decision making. Improving this process will decrease the distress experienced by both healthcare providers and patients’ family members, honor our patients, and make a humane and caring end of life decision.
This article is dedicated to my dear Mom who had stroke on July 25, 2019 and lost her ability to make her own decision. Although she expressed orally “do not resuscitate” before the stroke event, our caring family has no intention to give up and at this moment we are trying everything possible to cure her illness and expect miracle to happen!
10 thoughts on “End of Life Decision Making”
An end of life decision is one of the hardest decisions to make. I wish I found this a couple of weeks ago because one of my friends just had to make this decision with her mom. I agree that it is important to keep connections opened with physicians because it is easy to get caught up in blaming yourself for something you have no control over. Thanks for sharing as I have no personal experience with death. But at least with this information, should I find myself in this situation I feel more prepared than not knowing.
Soon or late, you will face the end of life decision making, which may involve you or your family members. It is wise to have some knowledge about this so that you could make the best decision for all involved.
Thanks for this great article. I would rather people just let me pass on instead of keeping me alive with all these artificial medicines. I wouldn’t want to suffer living a limited and painful life with a terminal illness. But I understand that people have different views and I’m just saying what comes up for me. So I would definitely want to make sure that was clear to my relatives or whoever would be communicating on my behalf when I was at the end of my life.
You have some really interesting links on the side and they caught my attention so I clicked on them. Thanks for sharing all that valuable information on the sidebar as well as your main article.
It is very important to have you will writing down. In my case, my mom expressed his wishes orally that she don’t want to have artificial life supports. But as family member, we see her eye movement, occasionally call people’s name, and shake her head. There is life and we expect miracle happening though she is suffering right now.
Remember that when you write down your will, be as specific as possible so that your family could follow and act accordingly.
I have never envision that end of life decision making is part of the longevity. Apparently It is, since the longer you live, the greater the possibility you need to make such decisions.
Wow, this is a very well written post. I really hope for that miracle to happen. Actually I cake across this post because a friend of mine has a project as a medical student to write about end of life decision making under medical counselling. This is very educative and I’m haooy there is useful information here. I wish you and your family the best.
Thank you very much for your best wishes. This piece of information may be useful for all. Soon or late, people may face the end of life decision making for yourself and your family members. It is better be prepared.
With all due respect I feel that the wish of a person to have a DNR should be respected. I am a 2 time Cancer Survivor and now have a DNR due to the knowledge of what the Treatment in tales. The hardest Conversation was with my kids to make them understand why I have the DNR in my records. One of the Lessons I gave them is to NOT make it about them but me. What I mean is that the ones that are left behind are the ones that will have to live thru the loss and pain of loosing a loved one, and I believe that it is selfish if one just ignores the fact that a DNR is active because they do not want to deal with the pain. This Subject is very controversial and I give you much Credit to confront it, because it needs to. the more we know the better. In the end every Family is there own.
Thank you very much for sharing your personal experience with us. It is nice you have clear will and have clear instruction for your family to follow in case you face the end of life decision making.
It is very sensitive topic even our family right now. Some family members just refuse to discuss the end of life things. You are smart enough to raise this issue with your family when you are healthy and sounds to make decisions.
I now know that it is important to discuss this. As you said, the more we know, the better we are going to make the decisions.
Wao! Such a detailed article. It reminds me of watching my sister dying. I still feel guilty of the incidence till this very day. She was unconscious and could not make any decision. My perspective is that the doctor could have offered palliative care, instead she was put to hospice care too quickly without making any attempt. This felt so bad.
More so, my brother and I had a disagreement on which hospital to take her, we probably must have made a bad choice. As you said, these are some of the dilema family members face when making end of life decision for the patient. Thanks.
Thank you for sharing your personal experience with us. In a emergency, things happen rapidly. You need to make decision instantly. Look back, we made some mistakes. We sent our mom to the closest hospital, instead of the best hospital around.
In the hospital, operation was performed. My mom is 91 years old, she was very weak, and should not have any operation. The situation turned bad rapidly after surgery. But at that moment, doctor say the best therapy is surgery.
Of course, there is no regret. We have to make decision, bad or good (we don’t know when we make it) and move forward.