End of Life Communication & Shared Decision Making
Communicating about the end of life with patients has been reported as one of the most difficult and stressful parts of oncology. There is little training provided in most professional programs on how to do this well or how to gain confidence in having these discussions. We know that communicating well is very important to our patients and is associated with good patient care and patient satisfaction.1-2 However, the Institute of Medicine National Cancer Advisory Board determined that most cancer patients experience suboptimal outcomes, primarily due to the lack of effective communication.[i] Without effective communication, we will not succeed in supporting our patients in the manner in which they deserve. Table 1 includes some of the primary skills deemed important to effective communication in oncology.
Table 1. Clinician skills for effective communication:
| Domain2 | Skill2 | Tips and Examples |
| General communication with patients |
• Listens to patients • Encourages questions from the patient • Talks with patients in an honest and straight forward way • Gives bad news in a sensitive way • Willing to talk about dying • Sensitive to when patients are ready to talk about death
|
The patient may ask how many treatment options are left. This is a sign they are seeking a timeline to their death. The patient may be tearful or a family caregiver may start to cry during the appointment, a sign they are aware the illness may be progressing toward death. “You have just asked me how long I think you will live. Sounds like you are interested in discussing issues associated with death. Tell me more about what has been on your mind.”
|
| Emotional support |
· Shows compassion • Maintains hope and a supportive attitude • Responsive to patient’s emotional needs
|
Lean in, ask them what they are thinking about. What are they most worried about right now? What are they hoping for? |
| Accessibility and continuity |
• Takes as much time as needed with the patient • Avoids keeping the patient waiting without explanation or apology • Minimizes interruptions and focuses on the patient during visits · Ensures that they are accessible to the patient and family in a timely manner • Makes the patient feel confident that they will not be abandoned prior to death • Continues to be involved with the patient after referral to hospice • Has contact with the family after the patient’s death |
“I’m so sorry to keep you waiting. I know how important your time is. I had an unexpected issue I had to take care of…a call to make…last visit took longer than expected.”
“My team and I will still be here for you and want to know how you are doing as we make this transition.” (with hospice transfer)
To the family post-bereavement, “I’m so sad to learn about X’s death. I really appreciated the opportunity to serve X and you. We are thinking of you and wishing you peace and comfort.” |
| Competence |
· Knowledgeable about medical care • Takes the patient’s symptoms seriously • Recommends appropriate treatments for cancer and symptoms • Has good technical skills • Is prepared for appointments • Appropriately refers the patient to specialists • Knowledgeable about the care needed by patients during the dying process • Knows when to stop treatments that are no longer helpful |
Review all test results. Know which cycle of treatment the patient has recently received. Review notes by other providers since you last met with the patient, especially supportive care notes. Consider referrals to other specialists including palliative care, rehabilitation medicine, chaplains, psychosocial oncology, social work, and hospice when indicated. Screening and triage can help.
|
| Respect and humility |
• Polite and considerate • Treats patients (and families) as their equal • Admits when he/she does not know something • Comfortable with people who are dying • Does not view death as a medical or personal failure |
“I’m not certain about that, but I will look into this with my team.”
“It has been an honor to work with you. Sometimes things do not go the way we had hoped, despite our best efforts.” |
| Patient education |
• Gives enough detailed information so that patient understands their illness and treatments • Tells patient how this illness may affect their life • Guides patient and family to helpful resources • Talks with patients about what their dying might be like |
“Would you like to learn more about what might happen next or what you can anticipate as death approaches?” (prior to reviewing signs/symptoms of imminent death) |
| Team communication and coordination |
· Teaches the patient who to call for different problems • Makes sure there is someone available to help the patient when the physician is not available • Respects and uses the expertise of nurses, social workers, and other team members • Helps the patient and family get consistent information from the entire health care team • Guides patient or family to hospice in a timely manner
|
“I’m sorry you have gotten different messages. That sounds challenging. Let me see if I can help clarify to make sure you are getting good information to make decisions.”
“In my absence, you can communicate securely with our team by…. We will be working with you to manage any cancer-related problems. I trust that your primary care physician will continue to manage x,y,z.”
“Many patients struggle with the emotional aspects of cancer. We have a group of specialists who know how to best help you with these issues. I will place a referral for you. Let me know if you don’t hear from them in the next week.” |
| Personalization |
• Makes the patient feel unique and special • Treats the whole person, not just the disease • Considers the patient’s social situation when making treatment plans
|
“Tell me about your current supports. Who are the people in your life that you can count on?”
“Tell me about yourself. What is most important to you? How is cancer impacting your life outside of the medical center?” |
| Pain and symptom management |
· Is not afraid to prescribe pain medications when needed • Takes into account the patient’s wishes when treating pain and symptoms • Helps patients and families understand how to provide symptom and pain control
|
“You might hear a lot of different information on the news about taking pain medications. Many people with cancer take pain medications safely with good effects on pain. Not everyone becomes psychologically addicted to pain medications. We will work closely with you to make sure your pain is treated and that you are safely managing your medications.” |
Click here to view table as PDF
End of Life Communication – Hope across Disease Phases
End of life discussions should occur early in the treatment trajectory to facilitate advance care planning. Patients want and expect honesty from their providers. This begins with clinicians being honest with themselves about their patient’s clinical situation and potential outcomes. End of life discussions ideally begin at diagnosis by focusing initially on a conversation about Hope. Research focused on fostering and understanding hope in people with terminal illness can apply across all cancer phases, by incorporating key questions about hope:3-4
- What does hope mean to you?
- Tell me about your hope? What kinds of things do you hope for?
- If you could identify a source of hope for yourself, what would it be?
- What things cause you to hope?
- What helps you to maintain your hope or makes you feel hopeful?
- Tell me three things that bring you joy.
This can be supplemented or balanced with what patient are most worried about or fear the most.
- What are you most worried about?
- What is your greatest worry or fear?
- Tell me more about what you fear the most with your diagnosis or current treatment.
Asking these questions initially and repeating them again at follow up visits can help the clinician determine the patient’s understanding of their clinical situation – whether their understanding is accurate and realistic.
When patients are unrealistic or “hoping for a miracle” after several different lines of therapy, gauging their preference for prognostic information as a next step can allow for conversations about a shorter length of life and preserve quality of life and functional abilities to the degree possible. This can be done sensitively:
- “I share your wish for a miracle, yet I worry that long-term survival may not be possible. I hope to help improve your symptoms and quality of life.”
Finally, the next and last phase of hope is to orchestrate with the patient a good and peaceful death. This does not involve taking hope away, rather helping a patient to shift their hopes given limited life expectancy (e.g., spending quality time with family and resolving important relationship, work, and financial issues). Some oncologists may experience a sense of failure about not being able to save their patient’s life; however, they can continue to have an influential role by transitioning goals of care in a hopeful manner. This process involves shared decision-making that includes patients and those closest to them, with sensitivity to culture, values, resources, and individual differences.
Oncology teams also can help the patient define and develop alternative ways to fulfill life goals and hopes for the future. One method is writing letters or having cards for milestone moments and expressing in these documents what he/she wants to tell their loved one (child/grandchild) on that significant milestone day. It provides a way to “still be here.” Adult children who were recipients of these cards and letters with their parent’s words of wisdom, advice and expressions of love meant on milestone days found these helpful.2
Dignity therapy is another intervention for leaving a living legacy for family members.
https://www.dignityincare.ca/en/toolkit.html
Shared Decision Making
An early JAMA study on informed decision making indicates that 9% of outpatient primary care and surgical visits met the definition of informed decision making and less than 1% of complex decisions were completely informed. 8 This study highlights that physician are better at discussing the nature of interventions, but very rarely include an assessment of patient understanding. A more recent study of patients with stage IV cancer demonstrates documentation of goals of care discussions in only 27% of cases. Shared decision making, a key component of patient-centered health care, is a process in which clinicians and patients work together to make decisions about tests, treatments, and care plans based on clinical evidence that balances risks and anticipated outcomes with patient preferences and values. (Informed Medical Decisions Foundation, 2012) The aim of shared decision-making is “to place the patient at the heart of every decision and at the very center of care itself.”5 SDM is associated with increased patient knowledge, patient satisfaction, improved function, greater confidence in decisions, and decisions that are more in line with patient values and goals. A useful strategy for navigating these shared decision-making goals of care discussions is REMAP:6
| Reframe |
Placing details of patient’s illness into context and justifying need to re-evaluate plan of care. · Provides headline · Reorients patient · Asks for teach back
Use the “teach back” method to ensure patient understanding. Do not rely on yes/no responses to verify understanding. |
“What do you understand about your recent scans?”
“It seems we are in a different place now in terms of our planning.”
“I’m worried that…”
“Tell me what you are thinking.”
“Based on our discussion today, how would you tell your family/friends about where things stand.” |
| Expect Emotion | Use reflective statements acknowledging presence of emotion |
“I understand this is hard to hear.”
“I know this is difficult.”
“What are you most worried about at this point?”
“Can we discuss what this means for our next steps?” (delaying if necessary due to overwhelming emotion) |
|
Map Out Patient Values
|
Use of open-ended questions to understand patient goals and values |
“What is most important to you given this information?”
“Let’s discuss what you’d like to avoid in this situation.”
“Are there people you would like to share this information with to guide your decisions?”
“How might this impact your goals and relationships?” |
| Align with Values |
Verbally reflect what you have heard from the patient including potential ambivalence.
Summarize priorities and values.
When values are clarified and clinician has achieved understanding, ask permission to make a recommendation. |
“From what you’ve said, it sounds as if X and Y are important to you, and you absolutely would not want Z.”
“Are there other things that are important to you?”
“Is it okay if I give a recommendation based on what we’ve discussed today?”
|
| Propose a Plan |
Propose plan to maximize patient values and goals.
Be clear when goals may not be possible.
For patients/families denying recommendation, assess how you can be most helpful moving forward. |
“Given your goal to X and prevent Z, I’d propose that we…”
“I don’t believe Y will be possible given what we know at this point.”
“When the time comes, it sounds like you would like a natural death, not connected to technology.”
“What do you think?” “What questions do you have?” Tell me what you understand from our conversation. |
Click here to view table as PDF
Compassion, communication skills, experience, and thoughtful reflection on the meaning of dying is as important as oncology knowledge in the setting of end of life.2
Quality end of life care consists of:2
- Providing patients and families with sufficient understanding of prognosis, and risks and benefits of treatment to facilitate treatment decision-making.
- Development of clear and informed treatment goals shared by patient, family, and oncology team.
- Featuring service delivery that addresses and is consistent with patient and family goals of care.
- Emphasizing and promoting quality of life, with practical, emotional, and spiritual support, while minimizing symptomatic complaints and distress.
The American Society of Clinical Oncology standards recommend engaging in realistic discussions about prognosis, potential benefits and outcomes of active treatment combined with palliative care, and the impact of treatment decisions on quality of life, symptoms, finances as well as survival. These discussions help patients make more informed decisions that align with their personal goals,2 rather than pursuing active treatment at all costs.
What is a Good and Peaceful Death – Patient and Family Perspectives
In her research, Steinhauser (2000)7 has defined six major components of a good and peaceful death:
- pain and symptom management
- clear decision-making
- preparation for death
- completion (i.e., life review, resolving conflicts, time with friends/family, saying good-bye)
- contribution to others
- affirmation of the whole person.
Other elements that may assist a person in experiencing a good and peaceful death include:8-11
- Recognizing they had a purpose for living
- Knowing what legacy they are leaving after they are gone
- Making financial and legal arrangements
- Seeking forgiveness of self and/or others
- Feeling confident that others will speak fondly of them after they are gone
- Dying with dignity in the environment of their own choosing
- Practicing spirituality and/or finding sources of meaning at the end of life
- Making contributions to others.
- Sharing end of life communication and decision-making with family and friends[ii]
Conclusion
End of life communication can be challenging. Yet, when integrated thoughtfully into patient care, it can become one of the most fulfilling aspects of a clinician’s work. Such discussions must not be delayed until the end, but rather carried out proactively, especially in the setting of advanced or metastatic cancer. The final outcome of these conversations is the orchestration of a good and peaceful death for the patient, as well as a less stressful experience for their loved ones, and, in many cases, for their oncology team.
References
1 Smith TJ. The art of oncology: when the tumor is not the target- tell it like it is. Journal of clinical oncology, Vol 19. 3441-45. 2000
2 Curtis JR, Wenrich MJ, Carline JD, et al. Understanding physicians’ skills at providing end of life care. Journal of General Internal Medicine. 16: 41-49. 2001
3 Herth K. Fostering hope in terminally ill people. Journal of Advanced Nursing. 15. 1250-59. 1990
4 Shockney L. Fulfilling Hope: Supporting the needs of patients with advanced cancers. Nova Science. NY. 2014
5Elwyn, G., Frosch, D., Thomson, R., Joseph-Williams, N., Lloyd, A., Kinnersley, P., … & Barry, M. (2012). Shared decision making: a model for clinical practice. Journal of general internal medicine, 27(10), 1361-1367.
6Childers, J. W., Back, A. L., Tulsky, J. A., & Arnold, R. M. (2017). REMAP: A framework for goals of care conversations. Journal of Oncology Practice, 13(10), e844-e850.
7Steinhauser, K. E., Clipp, E. C., McNeilly, M., Christakis, N. A., McIntyre, L. M., & Tulsky, J. A. (2000). In search of a good death: observations of patients, families, and providers. Annals of internal medicine, 132(10), 825–832. https://doi.org/10.7326/0003-4819-132-10-200005160-00011
8Singer PA, Martin DK, Kelner M. (1999) Quality of life care-patients’ perspectives. JAMA. Vol 181, No 2, 163-68. Bottom of Form
9National Academies of Sciences, Engineering, and Medicine. Approaching Death: Improving Care at the End of Life. Washington, DC: The National Academies Press. https://doi.org/10.17226/5801.1997
10 Yabroff K, Mandelblatt JS, Ingham J. The quality of medical care at the end of life in the USA existing barriers and examples of process and outcomes measures. Palliative Medicine. 18(3), 202-216. 2004.
11Peppercorn JM, Smith TJ, Helft PR, et al. American society of clinical oncology statement: toward individualized care for patients with advanced cancer. Journal of Clinical Oncology. 29:755-60. 2011.
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