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Study: What influences aggressive end-of-life care for ovarian cancer?

Summary

Aggressive medical treatment is often given to people with terminal ovarian cancer when prior treatment has stopped working. This aggressive end-of-life treatment conflicts with clinical guidelines, may increase pain and suffering and does not extend life. This study found that the end-of-life care that a person with ovarian cancer receives is influenced by their doctors. (Posted 1/3/23)

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What influences aggressive end-of-life care for ovarian cancer?

RELEVANCE

Most relevant for: People with advanced ovarian cancer. It may also be relevant for:

  • people with metastatic or advanced cancer
  • people with ovarian cancer

Relevance: High

Strength of Science: High

Relevance Rating Details


STUDY AT A GLANCE

What is this study about?

Researchers wanted to understand why some people with ovarian cancer continue to receive aggressive medical treatment even after their prior treatment stops working. The researchers looked at data collected between 2000 and 2016 to see how differences among doctors—such as specialty, number of patients seen and geographic region—may affect end-of-life treatment choices. Doctors influenced whether patients received chemotherapy in the last two weeks of life or were referred to hospice. However, the differences in a doctor’s specialty, patient volume and region did not explain most of these effects.

Why is this study important?

The medical community increasingly understands the importance of listening to cancer patients and focusing on their quality of life at all stages of treatment. This is especially true at the final when a person’s cancer no longer responds to treatment and their organs stop working. While doctors once typically provided aggressive treatment when a person was nearing the end of life, the American Society of Clinical Oncology—the largest professional society of cancer providers—and the National Quality Forum—an organization committed to helping the US achieve better and affordable care—now discourage intense or invasive treatment at the end of a person’s life. Instead, guidelines favor moving patients to hospice care where their needs, as well as their loved ones’ needs, will be met and their priorities respected. Yet, instead of being offered hospice, many people with untreatable ovarian cancer continue to receive chemotherapy, undergo invasive tests and spend time in intensive care in their final days of life. This study was done to understand why that happens.

How is end-stage ovarian cancer treated?

End-stage ovarian cancer means a person cannot be cured. , also called supportive care or comfort care, is often used to help relieve symptoms.

The goal of is to improve a patient’s quality of life and relieve their suffering. It can help people cope with pain, fatigue, shortness of breath, loss of appetite, nausea, constipation and difficulty sleeping, as well as mental and emotional symptoms, such as distress, depression and anxiety. can be given at any point during a patient’s illness while hospice care is only given at the end-of life.

may include:

  • help with medications.
  • emotional or spiritual support.
  • relaxation techniques.
  • support for caregivers and family members.

Hospice care may also be an option for people with end-stage ovarian cancer. The only goal of hospice care is comfort and quality of life. Hospice care may occur in a hospice facility, a hospital, a long-term care facility or the patient’s home.

About the study
This study looked at medical claims data among 6,288 women who were diagnosed with ovarian cancer between 2000 and 2015 and who died between 2000 and 2016.

The study authors grouped aggressive end-of-life care into three general areas: hospice use, end-of-life treatment and end-of-life hospital use. They looked at:

  • no hospice.
  • late hospice enrollment (within three days of dying).
  • more than one emergency department visit.
  • more than one hospitalization.
  • an intensive care unit (ICU) stay.
  • terminal hospitalization (dying in the hospital).
  • receiving chemotherapy in the last two weeks of life.
  • receiving life-extending measures, including feeding tubes, ventilation or resuscitation (CPR).
  • undergoing invasive procedures, including surgery requiring anesthesia, placement of an arterial or central line, endoscopy, interventional radiology, radiotherapy or pelvic exam with tissue sampling.

For the purposes of the study, the researchers focused on the doctor who saw the patient most often for cancer treatment. The research team grouped doctors according to the following characteristics:

  • specialty (gynecologic-oncology, gynecology, oncology or other).
  • annual number of patients seen by the doctor for ovarian cancer (<3, 3 - <5, 5 - <10, 10 or more).
  • geographic region of the US.

Researchers also collected data on patients and doctors, such as race, marital status, the poverty level of the physician’s geographical area of practice and the patients’ urban or rural residence, age of death, years between diagnosis and death, at diagnosis and prediction of life expectancy based on other medical conditions. Only doctors with at least two patients in the sample were included. On average, doctors had four patients in the sample.

In this study, end of life was defined as the last two weeks of a person's life.

Study findings

Researchers wanted to understand to what extent aggressive end-of-life treatment among people with advanced ovarian cancer was due to the treating doctor. They looked at the use of hospice, chemotherapy and other end-of-life treatments and end-of-life hospitalization.

About half of the people with advanced ovarian cancer (51 percent) received one form of aggressive end-of-life care.  The most common types of aggressive care were:

  • 29% were not enrolled in hospice.
  • 19% had an intensive care unit stay.
  • 21% received an invasive procedure.

The doctors and their related characteristics such as practice size, specialty and region did not explain all of the variation in aggressive care among patients; other unknown factors accounted for most of this variation. However, doctors did have a small but significant effect on the end-of-life choices of ovarian cancer patients.

A doctor's specialty affected end-of-life care.

  • People who received more aggressive care (they stayed in the ICU, did not enroll in hospice or had life-extending or invasive procedures) most often had doctors who were not gynecologic oncologists, Ob/Gyns or medical oncologists.
  • People who saw a gynecologic oncologist or oncologist for end-of-life care were:
    • less likely to have invasive procedures
    • less likely to have life-extending procedures
    • more likely to enroll in hospice care
      • Those who were treated by a gynecologic oncologist were the most likely to have enrolled in hospice care.

The size of a doctor’s practice affected end-of-life care.

  • Patients of doctors with larger cancer practices were more likely to be enrolled in hospice care but were also more likely to have invasive or life-extending procedures.

The use of chemotherapy during end-of-life care varied by doctor.
Chemotherapy in the last two weeks of a patient’s life was uncommon. The authors noted, "End-of-life chemotherapy is considered low-quality care because it reduces the quality of life without improving survival, and it can increase the risk for [needing] other aggressive care such as the use of ventilators or dying in the ICU."

This study found that overall, the use of aggressive end-of-life care in ovarian cancer varies somewhat by doctor, but most of the differences were not explained.  More research is needed to identify patterns among patients and doctors to understand why they make these choices. The study authors recommend that efforts to improve the quality of care at the end of a patient’s life should target physicians to help ensure that the care provided is in the best interest of individual patients.

How can family and caregivers help?
Family and caregivers can take steps to help a person with end-stage ovarian cancer be more comfortable, including:

  • using an “eggshell” mattress or foam cushions on chairs.
  • helping the person change positions frequently.
  • changing bedsheets as needed.
  • keeping the person warm with blankets.
  • providing a straw for the person to sip liquid if they can swallow.
  • using a moisturizing lotion to soothe and relieve dry skin.
  • using cotton swabs with lip balm to moisten dry mouth and lips.
  • massaging the person’s body gently if it is soothing for the individual.

Simply being present may also help. Sit with the person. When you talk, do so in a clear and calm voice. Remind the person of the time, place and people present to help ease their confusion and disorientation. It may help to say things that are supportive and reassuring but that do not require a response. Remind the person that you are there with them, that you love them and you support them. Offering a gentle touch and holding the person’s hands can also be comforting. If the patient is receiving hospice care, hospice caregivers will often help with many of these suggestions and can be valuable resources.

What does this mean for me?

People with cancer should receive realistic information about the limitations of additional treatment so that they can make informed decisions about what their end-of-life care will involve. It’s important to express your wishes early and often with loved ones and your healthcare team. Speaking with your doctor or care team about a Goals of Care discussion may be helpful. This can help you discuss what is important to you so your doctor knows when they make care recommendations.

An advance healthcare directive is a legal document in which you share your wishes about medical care: what kinds of tests and procedures you would or would not want in different life-threatening situations. You can develop the document with a hospital social worker or family law attorney. Several organizations also offer this service. The directive can be shared with your doctors and your loved ones. See the Resources block below.

Reference

Mullins MA, Uppal S, Ruterbusch JJ et al., Physician Influence on Variation in Receipt of Aggressive End-of-Life Care Among Women Dying of Ovarian Cancer. JCO Oncology Practice; 2021; 18:3.

Corn BW, Feldman DB, Hull JG et al., Dispositional hope as a potential outcome parameter among patients with advanced malignancy: An analysis of the ENABLE database. Cancer; 2021; 128:2.

Questions To Ask Your Doctor
Questions To Ask Your Doctor

  • What is the best way for me to share my preferences with you regarding my end-of-life care?
  • How do you decide when to stop treatment or offer hospice?
  • What are my options for end-of-life care?
  • What do I need to do to ensure that your team will respect my wishes related to my end-of-life care?
  • If I chose to have a particular procedure or treatment, what are the benefits and risks?

Guidelines
Guidelines

The National Comprehensive Cancer Network (NCCN) Practice Guidelines on Standards of include: 

  • All cancer patients should be screened for needs at their initial visit, at appropriate intervals and as clinically indicated. 
  • Patients/families/caregivers should be informed that is an integral part of their comprehensive cancer care. 
  • specialists should be readily available to provide consultation or direct care to patients/families/caregivers and/or health care professionals who request or require their expertise. 

Patients, families or caregivers with any of the following conditions or situations should be referred for palliative care:

  • uncontrolled symptoms or pain
  • moderate-to-severe distress related to diagnosis or treatment
  • additional serious physical, psychiatric or psychosocial conditions
  • unresolved concerns or lack of understanding about the course of their disease
  • advanced cancers
  • evidence of worsening prognosis
  • communication barriers
  • financial limitations
  • family discord

Updated: 08/06/2022

Finding experts
Finding experts

The following resources can help you locate an expert near you. 

Finding and hospice services

 

Related experts

Some symptoms may be managed by other experts. People experiencing side effects from cancer or treatment may benefit from a consultation with the following experts.

Acupuncture experts

  • The National Certification Commission for Acupuncture and Oriental Medicine has a searchable directory of licensed acupuncturists. 

Mental health experts

Nutritionists

  • Eatright.org, the website for the Academy of Nutrition and Dietetics, has an online tool to find a nutritionist in your area. Search by specialty, including "cancer," "weight management" and "heart health."

Physical therapists

  • The American Physical Therapy Association's ChoosePT.com website allows you to search for a physical therapist in your area. 

Sexual health experts

Sleep experts


Other ways to find experts

Updated: 04/09/2023

IN DEPTH

About the study

This study looked at medical claims data among 6,288 women who were diagnosed with ovarian cancer between 2000 and 2015 and who died between 2000 and 2016.

The study authors grouped aggressive end-of-life care into three general areas: hospice use, end-of-life treatment and end-of-life hospital use. They looked at:

  • no hospice.
  • late hospice enrollment (within three days of dying).
  • more than one emergency department visit.
  • more than one hospitalization.
  • an intensive care unit (ICU) stay.
  • terminal hospitalization (dying in the hospital).
  • receiving chemotherapy in the last two weeks of life.
  • receiving life-extending measures, including feeding tubes, ventilation or resuscitation (CPR).
  • undergoing invasive procedures, including surgery requiring anesthesia, placement of an arterial or central line, endoscopy, interventional radiology, radiotherapy or pelvic exam with tissue sampling.

For the purposes of the study, the researchers focused on the doctor who saw the patient most often for cancer treatment. The research team grouped doctors according to the following characteristics:

  • specialty (gynecologic-oncology, gynecology, oncology or other).
  • annual number of patients seen by the doctor for ovarian cancer (<3, 3 - <5, 5 - <10, 10 or more).
  • geographic region of the US.

Researchers also collected data on patients and doctors, such as race, marital status, the poverty level of the physician’s geographical area of practice and the patients’ urban or rural residence, age of death, years between diagnosis and death, at diagnosis and prediction of life expectancy based on other medical conditions. Only doctors with at least two patients in the sample were included. On average, doctors had four patients in the sample.

In this study, end of life was defined as the last two weeks of a person's life.

Study findings

Researchers wanted to understand to what extent aggressive end-of-life treatment among people with advanced ovarian cancer was due to the treating doctor. They looked at the use of hospice, chemotherapy and other end-of-life treatments and end-of-life hospitalization.

About half of the people with advanced ovarian cancer (51 percent) received one form of aggressive end-of-life care.  The most common types of aggressive care were:

  • 29% were not enrolled in hospice.
  • 19% had an intensive care unit stay.
  • 21% received an invasive procedure.

The doctors and their related characteristics such as practice size, specialty and region did not explain all of the variation in aggressive care among patients; other unknown factors accounted for most of this variation. However, doctors did have a small but significant effect on the end-of-life choices of ovarian cancer patients.

A doctor's specialty affected end-of-life care.

  • People who received more aggressive care (they stayed in the ICU, did not enroll in hospice or had life-extending or invasive procedures) most often had doctors who were not gynecologic oncologists, Ob/Gyns or medical oncologists.
  • People who saw a gynecologic oncologist or oncologist for end-of-life care were:
    • less likely to have invasive procedures
    • less likely to have life-extending procedures
    • more likely to enroll in hospice care
      • Those who were treated by a gynecologic oncologist were the most likely to have enrolled in hospice care.

The size of a doctor’s practice affected end-of-life care.

  • Patients of doctors with larger cancer practices were more likely to be enrolled in hospice care but were also more likely to have invasive or life-extending procedures.

The use of chemotherapy during end-of-life care varied by doctor.
Chemotherapy in the last two weeks of a patient’s life was uncommon. The authors noted, "End-of-life chemotherapy is considered low-quality care because it reduces the quality of life without improving survival, and it can increase the risk for [needing] other aggressive care such as the use of ventilators or dying in the ICU."

This study found that overall, the use of aggressive end-of-life care in ovarian cancer varies somewhat by doctor, but most of the differences were not explained.  More research is needed to identify patterns among patients and doctors to understand why they make these choices. The study authors recommend that efforts to improve the quality of care at the end of a patient’s life should target physicians to help ensure that the care provided is in the best interest of individual patients.

How can family and caregivers help?
Family and caregivers can take steps to help a person with end-stage ovarian cancer be more comfortable, including:

  • using an “eggshell” mattress or foam cushions on chairs.
  • helping the person change positions frequently.
  • changing bedsheets as needed.
  • keeping the person warm with blankets.
  • providing a straw for the person to sip liquid if they can swallow.
  • using a moisturizing lotion to soothe and relieve dry skin.
  • using cotton swabs with lip balm to moisten dry mouth and lips.
  • massaging the person’s body gently if it is soothing for the individual.

Simply being present may also help. Sit with the person. When you talk, do so in a clear and calm voice. Remind the person of the time, place and people present to help ease their confusion and disorientation. It may help to say things that are supportive and reassuring but that do not require a response. Remind the person that you are there with them, that you love them and you support them. Offering a gentle touch and holding the person’s hands can also be comforting. If the patient is receiving hospice care, hospice caregivers will often help with many of these suggestions and can be valuable resources.

Strengths and limitations

Strengths

  • This study addresses a topic of high importance to people with ovarian cancer.
  • This study looked at a large group of people with ovarian cancer.
  • The study defined aggressive care using a proven set of indicators, allowing comparison with other research.

Limitations

  • This study focused on the physician who most often provided a patient’s care, but researchers could not confirm that this doctor had the most influence in the use of end-of-life care.
  • The study only looked at women who were over age 66. The median age of ovarian cancer diagnosis is 63 so this study may be less representative of younger patients including those with hereditary ovarian cancer. It is unknown whether younger patients would be more or less likely to be given aggressive care in their final days.
  • Only people with fee-for-service Medicare insurance were included (no HMOs were included).
  • A small amount of appropriate may have been miscategorized as aggressive care, due to the study design and dataset.
  • This study does not provide any information specifically about people with ovarian cancer caused by an inherited gene mutation.
  • Because the study sample mostly included non-Hispanic white people (86.1%) who live in urban areas (98%) with little poverty (84.9%), it may not be generalizable to a more diverse population.

Context

This study is the first to look at physician factors in aggressive end-of-life care of ovarian cancer patients. It builds on prior work that found:

  • people with ovarian cancer are more likely to choose hospice if their healthcare team recommends it.
  • physician factors, not patient beliefs, greatly influence end-of-life care for people with other cancers.

Making the decision to stop aggressive cancer treatment and shift to symptom management and comfort measures can be difficult. Some doctors who treat ovarian cancer, for example, have seen some patients improve after a rough time—an experience that may increase hope on the part of doctors. Likewise, patients and families are encouraged to maintain hope. Yet, people who receive aggressive care at the end of their lives generally have worse quality of life and rarely live longer. Family members also fare worse, feeling less satisfied with the experience. This study showed that specialized doctors (gynecologic oncologists and medical oncologists) more often support less aggressive end-of-life approaches.

Expert Guidelines
Expert Guidelines

The National Comprehensive Cancer Network’s (NCCN) Guidelines for are recommendations for healthcare providers related to hospice and end-of-life care for patients. This includes:

  • speaking with patients, their families and caregivers about preferences for end-of-life settings and care. 
  • understanding a patient's values and decisions as their health status changes.
  • making medical care recommendations that match the patient's values and goals.
  • assuring that patients have completed an advance care plan and that the plan is followed.
  • assessing any conflict between a patient and their family or caregivers. Consulting with for conflict resolution, if needed.
  • addressing concerns and fears about dying.
  • educating patient/family/caregiver on the process of dying.
  • addressing any needed transitions in care.
  • referring the patient to hospice care agencies.  
  • informing other involved healthcare professionals of the patient's status. 
  • Exploring a family’s desire for organ donation and/or autopsy.
  •  

Updated: 03/03/2023

Who covered this study?

MDedge

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