“Studies show that palliative therapies not only improve patient quality of life, but can even extend life,” said ASCO President George W. Sledge, Jr., MD. In fact, a recent study found that patients with advanced lung cancer who received both chemotherapy and palliative care immediately after diagnosis lived almost three months longer than those receiving chemotherapy alone (N.Engl. J.Med.2010; 363:733-42).

Many people think palliative care means end-of-life care. It’s not the same. Palliative care is a growing specialty focused on symptom control and maintaining quality of life—according to the patient’s goals.  Experts say it should be initiated, along with disease-directed treatments, soon after diagnosis—especially in patients having aggressive disease or severe symptoms or side effects. (Hospice, or end-of-life care, begins when the patient is expected to live less than six months and when disease-directed treatments are discontinued.)

In a special January 24^th article in its Journal of Clinical Oncology, ASCO called on physicians to start candid discussions about prognosis, benefits and risks of treatments, and palliative care options soon after initial diagnosis of advanced cancer. Currently this happens with less than 40% of such patients.

Even the best oncology practices have great room for improvement. In an ongoing ASCO study of 5,500 patient records from 600 oncology practices who joined a quality improvement initiative, medical records showed that only 45% of cancer patients were enrolled in hospice before death: Of those, one-third were enrolled in the last week of life. And even in these practices, records from the last visits with the oncology team showed that two of three patients did not receive appropriate management for shortness of breath and 20 % did not receive appropriate pain management. Both are key components of palliative care.

ASCO also called on medical schools to include palliative care training into oncology programs, and on insurers to expand pilot programs that cover palliative care without requiring patients to abandon cancer-focused treatments.

To help patients, ASCO has released a new booklet that clearly explains options for advanced cancer care, with examples of disease-directed treatment, palliative care to manage symptoms and side effects; and hospice care.

Source: American Society of Clinical Oncology, J. of Clinical Oncology, Jan. 24 2011

In a study of 150 advanced lung cancer patients, starting palliative care along with standard life-prolonging treatment when patients were first diagnosed not only improved their mood and quality of life, it actually increased the time they lived.

Although patients who received early palliative care received less aggressive treatment at the end of life, they lived almost 3 months longer than patients who didn’t have such early support.

Study Plan

Newly diagnosed lung cancer patients at Massachusetts General Hospital were invited to participate in a randomized clinical trial where they either  received standard medical treatment for their cancer or had early palliative care along with that treatment.

Ten patients (14 percent) in the standard treatment arm who asked for it were able to receive care from the palliative team, but were not switched to the palliative arm of the trial.

Researchers measured quality of life, mood, and survival time in both groups.  They also looked at aggressive care at the end of life and whether patient’s preferences for resuscitation were recorded in the outpatient electronic medical record.

Palliative care was provided by a team of specialists who followed the guidelines of the National Consensus Project for Quality Palliative Care. Such teams are becoming more common in hospitals and some outpatient settings in the United States and are not limited to hospice programs.  More than 80 percent of large hospitals have them.

Multidisciplinary, they include professionals in the fields of medicine, nursing, social work, chaplaincy, counseling, nutrition, and rehabilitation.

The team paid special attention to:

• assessing physical and psychosocial symptoms
• establishing goals for care
• assisting with decision making regarding treatment
• coordinating care on the basis of the individual needs of the patient

Study Results

Quality of Life

• Compared to patients who received only standard cancer care, those who got early palliative care had scores for quality-of-life improve from the initial test to the one 12 weeks later.  Scores for the standard care group went down.
• The percentage of patients with depression was higher in the standard care group, although about 18 percent of patients in both groups got antidepressant medicines.
• Increased anxiety was about the same for both groups.

End-of-Life Care

When end-of-life care was analyzed, 105 (70 percent) of patients in the study had died.  For that group:

• 28 percent of standard care group had their wishes for resuscitation recorded in their charts, compared to 53 percent of those in early palliative care.
• Those in standard care spent a median of 4 days with hospice care, compared to 11 days for the early palliative care group.
• More than half (54 percent) of the standard group had some kind of aggressive care at the end of life, compared to a third (33 percent) of those who received care from the palliative team.

Aggressive care at the end of life was measured by any one of the following criteria:

• Chemotherapy within 14 days of death
• No hospice care
• Admission to hospice 3 days or less before death

Despite less aggressive care at the end of their lives, the early palliative care group lived a median of 11.6 months after their diagnosis, compared to 8.9 months for those who got standard lung cancer care.

Jennifer S. Temel, MD, and her team concluded,

Among patients with metastatic non–small-cell lung cancer, early palliative care led to significant improvements in both quality of life and mood. As compared with patients receiving standard care, patients receiving early palliative care had less aggressive care at the end of life but longer survival.

In an accompanying editorial, Amy S. Kelley, MD, MSHS., and Diane E. Meier, MD discuss the study in light of common beliefs that palliative care is only provided as an alternative to life-prolonging or curative care — “what we do when there is nothing more that we can do.”  They write,

This study is an example of research that shifts a long-held paradigm that has limited access to palliative care to patients who were predictably and clearly dying. The new approach recognizes that life threatening illness, whether it can be cured or controlled, carries with it significant burdens of suffering for patients and their families and that this suffering can be effectively addressed by modern palliative care teams.

The National Consensus Project for Quality Palliative Care Clinical Practice Guidelines define palliative care this way:

Palliative care is both a philosophy of care and an organized, highly structured system for delivering care. Palliative care expands traditional disease-model medical treatments to include the goals of enhancing quality of life for patient and family, optimizing function, helping with decision making, and providing opportunities for personal growth. As such, it can be delivered concurrently with life-prolonging care or as the main focus of care.

Far from being focused on dying, the Guidelines continue,

Palliative care affirms life by supporting the patient and family’s goals for the future, including their hopes for cure or life-prolongation, as well as their hopes for peace and dignity throughout the course of illness, the dying process, and death.

Healthcare reform legislation, the Affordable Care Act, will establish 15 pilot sites that offer palliative care integrated with treatment paid for by Medicare for people on Medicare. The new law also allows children who are enrolled in Medicaid or the Children’s Health Insurance Program (CHIP) to receive both hospice and curative care.

Some insurance programs will also cover hospice care and treatment at the same time, so ask your insurance plan about hospice coverage even if you want to continue therapy.

SOURCES: Temel et al., New England Journal of Medicine,Volume 363, Number 8, August 19, 2010.

Kelley and Meier, New England Journal of Medicine Editorial, Volume 363, Number 8, August 19,2010

What Does This Mean for Patients?

It is important to realize that this study was done with lung cancer patients, not those with colon or rectal cancer.  Only 150 patients at a single outpatient program were involved in the research.

It was completed in an outpatient program at a large Boston research hospital with access to a palliative care team.  Many outpatient settings might not have a similar team available.

While Medicare and insurance pay for palliative care in hospice programs, reimbursement is not as easily available when palliative care is integrated with chemotherapy or other treatment whose goal is to cure cancer or prolong life.

However, for this group of lung cancer patients aggressive care at the end of life did not help them to live longer which might help patients and families with other advanced cancers make decisions about moving to supportive care only near the end of life.

Some headlines from this issue:

• Palliative Care: Not Just for End of Life
• Listening to the Little Voice
• Patient to Patient Advice for Caregivers
• Health Care Reform & Cancer: Your Implementation Guide

You’ll also read testimonials from advocates who attended the C3 Call-on Congress in March and learn about the young, innovative researcher who is looking into new treatments for late stage colorectal cancer, thanks to a grant from C3.

To receive Momentum free at home, sign up at the C3 Action Center.

While patients in the telephone based-palliative care program did live slightly longer than patients who received regular care, the difference wasn’t significant.

Shortly after they were diagnosed with a life-threatening cancer, 322 study patients at Norton Cotton Comprehensive Cancer Center in Dartmouth, New Hampshire were randomly assigned to a telephone-based palliative care program or a control group of usual oncology care.

Advanced practice nurses made four initial educational calls to the patients based on the Charting Your Course intervention developed at Norris Cotton and Dartmouth Medical School.  Charting Your Course focuses on helping patients and families cope with physical, emotional, financial, and spiritual issues by focusing on:

• Problem-Solving
• Communications & Social Support
• Symptom Management
• Advance Care Planning

After the initial calls, nurses called about once a month to offer help with problem solving, communications with doctors and nurses, managing symptoms, and finding help in the community.

Patients and their family caretakers were also invited to a monthly group shared medical appointment (SMA) led by a certified palliative care physician and nurse practitioner to discuss their symptoms and any related problems such as insurance or social services needs.  SMA’s gave patients more time for in-depth discussions than their usual clinical care appointments.

When they first began the study, both patients in the active intervention group and a control group who received ordinary care completed questionnaires about their quality of life, how difficult their symptoms were, and how depressed they felt.  Questionnaires were repeated one month later and then every three months until the patient died or the study ended.

Analysis of the results found that patients who got phone calls did have better quality of life and were less likely to be depressed.  However, they rated symptoms such as pain, being active, nausea, depression, anxiety, drowsiness, appetite, sense of well-being, and shortness of breath as being as intense as did those who were receiving regular oncology care.  They had as many hospitalizations, ER visits, and days in intensive care as the control group.

Marie Bakitas, DNSc, APRN, and her team concluded,

Compared with participants receiving usual oncology care, those receiving a nurse-led, palliative care–focused intervention addressing physical, psychosocial, and care coordination provided concurrently with oncology care had higher scores for quality of life and mood, but did not have improvements in symptom intensity scores or reduced days in the hospital or ICU or emergency department visits.

SOURCE: Bakitas et al., Journal of the American Medical Association, Volume 302, Number 7, August 19, 2009.

Help for Patients

Project ENABLE (Educate, Nurture, Advise, Before Life Ends), of which the telephone intervention is a part, developed a book of helpful information about palliative care to enable patients and families to have a more active role in managing their lives with cancer.  ENABLE is a project of the Dartmouth-Hitchcock Medical Center.

Charting Your Course:  An Intervention for People and Families Living with Cancer can be downloaded from the DHMC Palliative Care Service website.

While the book is designed to be used with either weekly meetings with a trained ENABLE nurse educator or as part of the telephone interviews, it contains excellent information and activities for all patients and families beginning when cancer that is expected to end in death is first diagnosed.

Worksheets and examples can be used to identify problems and find solutions.

• The book explains how palliative care works to improve quality of life and help patients manage their symptoms.
• Help is provided to identify problems to be solved, set goals, and weigh strategies to meet those goals.
• Specific steps are described to help build a support network and communicate with supporters and medical professionals.
• Very detailed information is provided for identifying and managing symptoms such as loss of appetite, nausea, constipation, diarrhea, fatigue, fever, mouth sores, and pain.  What patients can do themselves, what help caregivers can provide, and when to get professional support is clearly and specifically outlined.  Emotional symptoms such as anger, depression, and anxiety are also included.
• Guides to dealing with advanced care planning and unfinished business are part of the book, with worksheets and lists of questions to ask.
• Additional resources are part of each section and included at the end.

Because it is frightening and uncomfortable, many patients don’t bring up the subject with their doctors.  Doctors avoid end-of-life discussions because they, too, find them uncomfortable and because they fear depressing patients or causing emotional problems.

Boston researchers interviewed 332 terminally ill cancer patients and their caregivers, following them until the patient’s death.  They also studied caregiver emotional health up to six months after their family member died.  Only about a third (37 percent) of patients had talked about the end of their lives with their doctor at the time of the first research interview.

Patients who talked about dying with their doctors didn’t have more major depression, nor did they worry more.  They did have more aggressive care in the last week of life.  Compared to patients with no end-of-life discussion:

• 1.6 percent versus 11 percent were placed on a ventilator
• less than 1 percent versus 6.7 percent were resuscitated
• 4.1 percent were admitted to the ICU compared to 12.4 percent

Patients who discussed end of life plans with their doctors had earlier enrollment in hospice which led to a better quality of life.  Aggressive treatment reduced quality of life.

Caregivers also fared better.  When there had been no discussion of end-of-life care, family caregivers were more than three times as likely to have major depression in the months after the patient died.  They had more regrets, more health concerns, and said that they were unprepared for the patient’s death.

When patients had a good quality of life before death, caregivers also reported better quality of life — before and after the death.

Alexi A. Wright, M.D. and her colleagues wrote,

Our results suggest that end-of-life discussions may have cascading benefits for patients and their caregivers. Despite physicians’ concerns that patients may experience psychological harm due to end-of-life discussions, we found no evidence that they were significantly associated with increased emotional distress or psychiatric disorders. Instead, the worst outcomes were seen in patients who did not report having these conversations.

 

Given the adverse outcomes associated with not having end-of-life discussions, there appears to be a need to increase the frequency of these conversations. By acknowledging that death is near, patients, caregivers, and physicians can focus on clarifying patients’ priorities and improving pain and symptom management.

SOURCE: Wright et al., Journal of the American Medical Association, Volume 300, Number 14, October 8, 2008.

Researchers compared the effects of simple touch to therapeutic massage for 380 patients in a hospice program.  Randomly, some patients received up to six 30-minutes massages over a three week period.  Other patients were simply touched briefly in ten different places on their body over three minutes. 

Both groups experienced pain relief right after the massage or simple touch treatment.  However, massage was more effective in relieving pain, reducing it about an average 2 points on a 10 point scale.  Touch reduced pain an average 1 point.

Mood improved for massage patients by about one and a half points, compared to one point for simple touch.

However, questionnaires showed no sustained improvement in quality of life or the distress patients felt from their symptoms over time.  Neither group used less pain medicine.

Jean S. Kutner M.D. and her team concluded,

Massage may have immediately beneficial effects on pain and mood among patients with advanced cancer. Given the lack of sustained effects and the observed improvements in both study groups, the potential benefits of attention and simple touch should also be considered in this patient population.

Some funding for the study was provided by the National Institutes of Health and National Center for Complementary and Alternative Medicine.

SOURCE: Kutner et al., Annals of Internal Medicine, Volume 149. Issue 6, September 16, 2008.

Researchers in the United Kingdom screened cancer patients for depression using tests that were originally designed to diagnose depression in women after childbirth.  They looked at feelings of worthlessness and sadness and thoughts of suicide, as well as measuring pain and cancer symptoms.  They found a little less than one-third (29 percent) of advanced cancer patients were depressed.  Six months later half of those identified patients who were still alive remained depressed.

In addition to depression, symptoms of tiredness and breathlessness were also associated with a risk of earlier death.

Professor Mari Lloyd-Williams from the School of Population, Community and Behavioural Sciences at the University of Liverpool said,

Depression affects 25% of patients with advanced cancer but at this stage it is difficult to diagnose. Whilst patients with advanced cancer are clearly very ill they can still be effectively treated for depression but the first step in the treatment is the recognition that the patient is depressed.

Professor Lloyd-Williams is at work on a larger study of 400 cancer patients to understand their psychological and emotional needs to improve their palliative care.

SOURCE: Lloyd-Williams et al. Journal of Affective Disorders, epublished ahead of print June 2008.

You may feel that planning is “giving up.”  You may feel that you need to focus only on staying well.  Your family and loved ones may not be comfortable thinking or talking about it.

All of this is understandable.  At the same time, planning can be empowering. There truly are “angels” out there to help you — especially if you’re facing late stage or end-of-life issues. It is not an admission of weakness, loss of hope, or lack of faith in your ability to fight cancer.  It’s simply planning — and chances are you’ll be glad you did it.

• Planning helps you regain a sense of control over life’s rollercoaster — including the ups and downs of cancer. You’ll realize how much excellent help is available for all stages of life, including those at the life’s end.
• Sooner is better.  It’s easier to think and talk about issues when they’re more distant, rather than during a crisis. Getting things taken care of can give a sense of relief, and free up your energy for more immediate challenges.
• Hospitals now require clear directions about your personal wishes and who can make decisions for you when you are admitted to the hospital for any reason.

Like all of your journey with cancer, planning for what you want during treatment and as the end of your life approaches requires a team.  You’ll want to include

• Family members and friends.  Talking over your thoughts and wishes can help clarify your own ideas and let your loved ones know what you need and want. Remember, at least one trusted family member or friend needs to know where you keep legal, financial, and medical directive information.
• Your health care team. especially the doctor who coordinates all your various specialty caregivers.
• An attorney.  You may need help with your will, advance directive or other legal documents.
• A financial planner, if applicable.
• Social workers.  They can talk with both you and your family about your fears, concerns, and needs.
• Hospice staff.   You can talk to hospice about their services and requirements before being enrolling.  If you have several hospice organizations in your community, see if one fits your needs most effectively.
• Insurance professionals.  They can clarify what coverage you have for care and help with paperwork that may be needed after your death; and
• Spiritual support including your clergy.  Some cancer patients are strengthened by planning a funeral or burial place.  Once done, they are free to continue with cancer care.  Pastoral care is also included in hospice services.

Where Can You Go for More Information

Caring Connections, a program of the National Hospice and Palliative Care Organization (NHPCO), has excellent resources for key aspects of palliative care including advance planning, assistance for caregivers, living with an advanced illness, and dealing with grief.

Cancer.net covers end-of life care on the patient information site of the American Society of Clinical Oncology including a podcast on palliative care that explains how palliative care supports people throughout life with cancer.

For a more comprehensive look at palliative care, both at the end of life and from the beginning of a life-threatening diagnosis, the National Consensus Project for Quality Palliative Care has published Clinical Practice Guidelines for Quality Palliative Care, available online for downloading.