Communicating End-of-Life Care Wishes With Clinicians and Family
Deciding what a family member would want when they are unable to decide for themselves can be an overwhelming prospect for some.
“One of the hardest things to learn is that our hopes for a loved one are no longer realistic,” said Carol Taylor, PhD, RN, a professor and internationally known ethicist at Georgetown University School of Nursing & Health Studies.
That may be why even though 92% of Americans believe it is important to talk about end-of-life care with loved ones, only one-third have had those conversations, according to The Conversation Project’s National Survey.
Do-not-resuscitate (DNR) orders, sometimes called “allow natural death” and “no code” orders, are perhaps the most well-known methods of expressing end-of-life wishes. The decision to refuse CPR in the event that a patient stops breathing or their heart stops beating is becoming increasingly popular among the elderly, as indicated by a report in the Journal of Medical Ethics. But end-of-life considerations also include designating a decision maker and expressing a preference for feeding tubes, breathing machines, and other interventions.
How can those with a terminal condition navigate these decisions and effectively communicate their wishes with family members and clinicians? How can family members best support their loved ones’ autonomy during this challenging time?
What Is End-of-Life Care?
End-of-life care is treatment for people with a terminal diagnosis and helps those at the end of their life die with dignity. Similarly, hospice care is pain management that primarily focuses on quality of life for the final six months. Palliative care encompasses some of the same medical decision-making, but occurs throughout the care continuum: during healing treatments, for symptom relief, or after a terminal diagnosis.
Below are some examples of questions that prompt care decisions:
If your heart stops beating or if you stop breathing, would you like to receive CPR?
CPR, or cardiopulmonary resuscitation, is an emergency technique using chest compressions and artificial breathing to maintain brain function. Patients have the option to opt-out from the procedure.
In the event that you cannot eat, swallow, digest properly, etc., do you want to use a feeding tube for nutrition?
A feeding tube is inserted through the patient’s abdomen or nose to deliver nutrients.
If you can no longer breathe properly or need to clear your airway, are you comfortable receiving a tracheostomy?
A tracheostomy is a procedure that opens a direct airway through an incision in the neck.
Would you be okay being machine-dependent?
“Machine-dependent” usually refers to being put on a ventilator, which controls a person’s breathing by managing airflow in and out of the lungs. Another example of machine dependency is ECMO (extracorporeal membrane oxygenation), which sustains a patient’s heart and lungs.
How do you want your pain controlled? Are you comfortable with artificial paralytics?
Artificial paralytics render patients completely immobile, including their vocal chords, and are used to manage pain.
However, these questions are applicable for more than just those who’ve received a terminal diagnosis. Considering these decisions in advance of a diagnosis or emergency can help ensure that all patients receive the kind of care most suitable for their goals.
How Can I Talk to My Health Care Provider About End-of-Life Care?
Patients bring their values and goals to every decision point—clinicians bring expertise and information. Together, they can create a plan using a model of shared decision-making.
The Code of Ethics for Nurses, for example, emphasizes the patient’s right to self-determination, as well as the nurse’s role in facilitating decision-making. It states: “Nurses have invaluable experience, knowledge, and insight into effective and compassionate care at the end of life.”
Taylor said clinicians’ value extends beyond supplying choices informed by evidence-based practice—they are also equipped to help patients understand how potential outcomes affect their own interests.
“It means not just saying we could do A, B, or C,” she said, “but what will each of those options look like not just today, but next month? Maybe even next year?”
“What would you do?” is a common question clinicians hear when patients and their families are faced with tough decisions. But that is not something they can legally answer, nor is it a question that utilizes the vast amount of information health care providers can share.
Instead, try asking questions that will allow you to make a more informed decision with the guidance of health care professionals:
What are my options? What does each option look like in practice?
Ask your care team to lay out the decision for you as clearly as possible, and make sure you understand the options. Are there visual aids like videos or diagrams available?
Can you tell me what happens next? And then what happens after that?
Learn more about what you will and will not have control over in this process. What are the next five steps, and how will they affect you?
What will my quality of life be like? Will I still be able to…?
Talk about what this decision means for your lifestyle. Ask your clinician to relate it to your day-to-day activities—what will have to change?
If I choose this option, can I change my mind later? What would happen if I did?
Some decisions can be altered later and some cannot; talk with your clinician about those realities early on. Would a time-limited trial be possible? How would that work?
What does “no hope” mean? What about “doing everything”?
Make sure you’re on the same page when it comes to terminology. Define what these words mean to you, and what they mean to your clinician; see if there are any differences. Other terms to align on include comfort care, palliative care, and hospice.
Given my history, what other decisions are likely to come up in the future?
Clinicians can give you a roadmap to your care, when possible. See if you can, or should, prepare for other upcoming medical decisions.
I haven’t thought about this and I don’t know what to do. Can you help me?
It’s OK to not know what to do, or how to figure it out. Asking an open-ended question like this gives clinicians the opportunity to share the information they think would be most helpful and relevant.
For more, see The Conversation Project’s Starter Kit (PDF, 400 KB).
Five Ways to Officially Communicate End-of-Life Wishes With Family and Clinicians
In the event a patient loses decision-making capacity, advance directives can be used as a replacement. This legal paperwork can include DNR orders, a living will, health care proxies, and more. The National Hospice and Palliative Care Organization has a collection of advance directives for every state available for download.
Do-Not-Resuscitate (DNR) Order
This can be placed in an advance directive and states that you do not want to receive CPR in the event that you stop breathing or your heart stops beating.
Legal in 42 states, Five Wishes (PDF, 270 KB) includes many of the above documents in a single space. It designates a health care proxy and treatment preferences, as well as wishes for what you want loved ones to know and how comfortable you want to be.
Health Care Proxy
Also called Medical Power of Attorney, a health care proxy has legal authority to make medical decisions on your behalf (PDF, 368 KB). They will have access to your medical records, conversations with your care team, and more.
Describes the treatments you would want in palliative or end-of-life care. A living will can also outline some of your values history.
Medical Orders for Life-Sustaining Treatment (MOLST)
Also called medical orders for scope of treatment (MOST), this is a medical order, as opposed to a legal document, filled out by a health care professional for a patient with a serious illness. It outlines the specific medical treatments you want in an emergency. See an example of the Washington, D.C., MOST form (PDF, 540 KB).
All of this paperwork takes into account larger questions people can ask about their own priorities, goals, and care preferences. Together, this makes a values history that can be used in conjunction with advance directives.
What Is A Values History?
A values history tries to define what makes living worthwhile. Haavi Morreim, JD, PhD, who specializes in family vs. family civil suits, said it requires thinking less about a specific medical decision and instead focusing on what these decisions mean for your life.
Morreim shared the story of a woman with a severe chronic illness. The patient was a French language teacher, and that passion influenced her care priorities. The most important feature for her quality of life was her ability to communicate and be able to tutor students in French from her bedside. Morreim explained that “for her, the most important thing was that when [she’s] no longer able to do something like that, it just becomes much less worth going on.”
Thinking about values in advance and discussing them with family or loved ones can help ensure you receive the right kind of care. For some, answering tough questions like, “What is most important about living?” can help determine when they would like to enter hospice care.
“There are other people for whom life is infinitely precious—it doesn’t matter the quality,” Morreim said. “It is important to know if somebody has and can express that view, ideally to family ahead of time.”
The information below helps direct a values history, which should be shared and discussed with family and loved ones to make sure they understand your responses and reasoning. You can also include this information in an advance directive, a legal documentation that outlines care wishes.
Your answers can, and probably will, change with time. Come back to these questions periodically and reevaluate your responses.
What events do you want to witness or experience? What milestones do you want to reach?
Example: I want to be there for the birth of my grandchild and celebrate my 50th wedding anniversary.
How self-sustaining do you need to be? What would you like to be able to do for yourself?
Example: I don’t need to be able to walk around, as long as I can still read and write on my own. I don’t need to be totally independent in terms of mobility.
How would you like to be able to communicate with others? What do you need to be able to express yourself and how do you need to express it?
Example: As long as I can communicate through words, written or spoken, I’m okay. I want to be able to share my experiences and understand what my family is sharing with me.
How important is it that your care adhere to a faith system?
Example: I want to be sure that my care aligns with my Catholic values and beliefs. I’d like a visit from the hospital chaplain to receive my last rites.
Is it more important for you to be pain-free or lucid? How would you like your pain to be managed?
Example: I would like to be lucid for as long as my pain is tolerable. But it’s more important to me that I’m comfortable than awake
What does that term mean to you?
Example: I think it means exhausting all reasonable options. I don’t think “doing everything” includes pursuing methods that have little to no likelihood of succeeding based on evidence.
Where do you want to receive care? Where do you want to spend your final days? Who do you want with you at that time?
Example: I would like to receive end-of-life care in a hospital but would want to receive hospice care in my home.
Download a PDF version of the Values History Worksheet (PDF, 115 KB).
Working through these questions is difficult, especially when the work is on behalf of a loved one. But it can be easier to make ethical care decisions through open communication, an understanding of the patient’s values, and official documentation.
“People don’t want to have these conversations. Our role is to educate and support what is best for the patient,” Taylor said. “We do this by supporting decisions that honor who he or she is, and that families will be able to live with for the rest of their lives.”
Please note that this article is for informational purposes only. Individuals should consult their health care professionals before following any of the information provided.
Citation for this Content: Nursing@Georgetown, the online MSN program from the School of Nursing & Health Studies