Early End of Life Care Talks Linked to Less Aggressive Care

Author: American Society of Clinical Oncology
Published: 15 Nov 2012 - Updated: 6 Oct 2026
Publication Details: Peer-Reviewed | Research, Study, Analysis

Table of Contents:
Synopsis - Definition - Overview - FAQs - Insights, Updates - Related Content

Synopsis

This research, published in the peer-reviewed Journal of Clinical Oncology, looks at how the timing of end of life care discussions shapes the treatment people with advanced cancer receive in their final weeks. Drawing on interviews and medical records for 1,231 patients with end-stage lung or colorectal cancer, the prospective study found that conversations held before the last 30 days of life were associated with less chemotherapy in the final two weeks, fewer intensive care and hospital stays, and greater use of hospice. The findings are useful to patients, family caregivers, seniors, and people with disabilities who are living with serious illness, because they give evidence-based support for raising care preferences early, while there is still time to weigh the options, talk things through with family, and plan for comfort-focused care at home.*

At a Glance

• 1 - Nearly half of all study participants received at least one form of aggressive care near the end of life.
• 2 - End of life care discussions typically began only 33 days before death, and 39 percent took place within the final 30 days.
• 3 - Seventeen percent of patients or surrogates did not recall an end of life care discussion, even though one was documented in their medical records.
• 4 - Aggressive care was used in 34 to 45 percent of cases with earlier discussions compared with 65 percent of cases with late discussions. Hospice use was 68 to 77 percent with earlier discussions versus 49 percent.

Topic Definition

End of Life Care Discussion

An end of life care discussion is a conversation between a patient with a serious or terminal illness, their family or chosen surrogate, and their medical team about the kind of care the patient wants as the illness progresses. It usually covers prognosis, the realistic benefits and burdens of further treatment, preferences about resuscitation and intensive care, and options such as palliative and hospice care. The purpose is to make sure the care a person receives in their final months matches their own goals and values, and clinical guidelines recommend holding these conversations soon after a diagnosis of advanced disease, during a period of relative medical stability, instead of waiting for a sudden decline.

Overview

Study Demonstrates that Earlier End of Life Care Discussions are Linked to Less Aggressive Care in Final Days of Life - EOL care discussions that took place before the last 30 days of life resulted in less frequent use of chemotherapy in the last 14 days of life and lower use of acute or ICU care in the last 30 days of life, which are both known to impact quality of life in patients' final days.

A large population and health systems-based prospective study reports earlier discussions about end of life care preferences are strongly associated with less aggressive care in the last days of life and increased use of hospice care for patients with advanced cancer. The study, published November 13, 2012, in the Journal of Clinical Oncology, provides the first-of-its-kind scientific evidence that timing of EOL care discussions affects decisions about EOL care.

The findings suggest that initiating EOL care discussions before the last month of life provides the patients opportunity to make decisions regarding their EOL care preferences in a way that late discussions don't seem to do. Patients need time to process the information with their family and make good plans based on that information.

National guidelines recommend that oncologists initiate discussions about EOL care soon after a diagnosis of advanced cancer in order to ensure care aligns with patient goals and wishes. Current guidelines state that conversations should happen "during periods of relative medical stability rather than acute deterioration, and with physicians that know the patient well." In addition, ASCO's own recommendations for patients with advanced cancer include prioritizing discussions related to advanced cancer care preference upon diagnosis. In 2012 ASCO also offered guidance on when oncologists should prioritize palliative and supportive care for patients with advanced cancer who have certain disease characteristics.

"Research has shown that choosing less aggressive care at the end of life offers important benefits for both patients and their caregivers. Patients have a better quality of life in their final days because there is a greater focus on symptom management, and they are more often able to receive care in their homes," said lead author Jennifer W. Mack, MD, MPH, a pediatric hematologist/oncologist at Dana-Farber/Children's Hospital Cancer Center. "This is also important because studies have shown that aggressive care is associated with a higher risk of depression among bereaved caregivers of cancer patients."

In the study, investigators identified discussions about hospice and resuscitation from interviews with 1,231 patients (or surrogates of patients who were deceased or too ill to participate) with end-stage lung or colorectal cancer and via review of their medical records. They found that, EOL discussions were initiated a median of 33 days before death and 39 percent of those discussions occurred within the last 30 days.

Nearly half of all the study participants received at least one form of aggressive care, including chemotherapy in the last 14 days of life, intensive care unit (ICU) care in the last 30 days of life, and acute, hospital-based care in the last 30 days of life. However, compared with cases where EOL discussions took place within the last 30 days of life, cases with earlier EOL discussions were associated with less frequent use of aggressive care (34-45 percent vs. 65 percent) and increased use of hospice care (68-77 percent vs. 49 percent).

"Most patients who recognize that their cancer is terminal want to receive less aggressive care at the end of life," said Dr. Mack.

However, aggressive care is still common in this setting, in part because discussions about the end of life are often postponed because they are difficult for both physicians and patients. This study also found that 17 percent of patients or surrogates did not recall EOL care discussions even though they were documented in the medical records, suggesting they may not have fully comprehended the content of the discussion. The authors emphasize that more research is needed to explore how content of EOL care discussions affects patients' comprehension of the information and subsequent decisions made. In addition, the study underscores a need for a national emphasis from ASCO and many other professional and patient groups on advanced cancer care planning in physician education and training programs.

ASCO Perspective:

Sandra M. Swain, MD, FACP, ASCO President:

"Conversations about treatment options for advanced cancer are extremely difficult for patients, their families and their oncologist. But this study underscores a growing body of evidence that the earlier these conversations take place, the better because they have a real impact on a patient's quality of life in their final days. We need more education for physicians on topics like this and more training on communication skills for discussing prognosis."

The Journal of Clinical Oncology is the peer-reviewed journal, published three times a month, of the American Society of Clinical Oncology (ASCO), the world's leading professional society representing physicians who treat people with cancer.

Frequently Asked Questions

NOTE: Researched FAQs by Disabled World (DW)

What is the difference between palliative care and hospice care?

Palliative care focuses on relieving symptoms, pain, and stress at any stage of a serious illness and can be given alongside treatment meant to cure or control the disease. Hospice care is a form of palliative care for people expected to live about six months or less who have chosen comfort-focused care instead of curative treatment.

What is an advance directive?

An advance directive is a legal document that records the medical care a person wants, or does not want, if they become unable to speak for themselves. It usually combines a living will with the appointment of a health care proxy, and it can be updated at any time while the person is able to make decisions.

What is a do not resuscitate order?

A do not resuscitate order, often shortened to DNR, is a medical order written by a clinician that tells health care staff not to perform CPR if a person stops breathing or their heart stops. It applies only to resuscitation and does not limit other care such as pain relief, medication, oxygen, or nutrition.

What is a health care proxy?

A health care proxy is a person legally appointed to make medical decisions for someone who can no longer make or communicate those decisions. The role is also called a health care agent, surrogate, or durable power of attorney for health care, depending on the state or country.

How do I start an end of life care conversation with my doctor?

Ask directly what the illness is likely to do over the coming months, what each treatment option can realistically achieve, and what the side effects and tradeoffs are. It helps to bring a family member or trusted friend, write questions down in advance, and say plainly what matters most, such as being at home, staying alert, or controlling pain.

Can a person change their mind about end of life care preferences?

Yes. Care preferences, advance directives, and DNR orders can be revised or withdrawn at any time while a person is able to make their own decisions. Someone who has enrolled in hospice can also leave hospice and return to disease-directed treatment if their goals or condition change.

What is a POLST form?

POLST stands for Physician Orders for Life-Sustaining Treatment, a portable medical order for people who are seriously ill or frail. It is completed with a clinician, turns care preferences into orders that emergency and hospital staff can follow right away, and goes by different names in some states, such as MOLST or POST.

Does choosing hospice mean giving up on medical care?

No. Hospice provides active medical care from a team that typically includes physicians, nurses, social workers, aides, and chaplains, with the goal of comfort and quality of life instead of cure. Symptoms such as pain, breathlessness, nausea, and anxiety continue to be treated, and family caregivers receive practical and emotional support.

Insights, Analysis, and Developments

Editorial Note: Nobody involved needs to be told that conversations about dying are hard, and that is exactly why they tend to get pushed back until a crisis forces the issue. This study puts a cost on that delay. When the talk is left until the last month, patients are more likely to spend their final days in a hospital or intensive care unit, and the lead author points to earlier research tying that kind of aggressive care to a higher risk of depression among the relatives left behind. The fact that some patients and surrogates had no memory of a discussion their records say took place is a reminder that one hurried conversation is not enough - people need plain language, time to absorb it, and a physician who knows them well. For anyone living with advanced illness, and for the family members who may one day have to speak for them, the practical lesson is to ask about prognosis and care choices during a stable period and to revisit those wishes as things change.*

Attribution/Source(s): This peer reviewed publication was selected for publishing by the editors of Disabled World (DW) due to its relevance to the disability community. Originally authored by American Society of Clinical Oncology and published on 15 Nov 2012, this content may have been edited for style, clarity, or brevity.

* Editorial additions by Ian C. Langtree.