End of life

The approach of death can sometimes lead to a kind of liberation. In its shadow, life suddenly takes on an intensity, resonance, and savor we may never have known before.

David Servan-Schreiber, MD, PhD, author of Anticancer: A New Way of Life

A letter from Laura

You or someone you love is nearing the end of life and you’ve made your way to CancerChoices. We want you to know that we sincerely care that you and your loved ones are able to spend this precious time saying what you need to say, doing what you need to do, living how you need to live. We believe that now is a time when love and grace illuminate the path to healing most brightly . . . whatever that healing is for each of you in your circle of beloveds.

We have walked beside many others who have come to their final days. We know that this is an unfamiliar place for most of you. We offer guidance so you can figure out what matters most now, explore the possibilities for how to live and die in the way that matters most to you, and find the support you need for that to happen.

We wish you to fare well as your expert caregivers and inner circle of family and friends take your hand from where we leave off. Poet Rainer Maria Rilke wrote, “Love and death are the great gifts that are given to us; mostly they are passed on unopened.” We hope that you are able to open the gifts that life, death, and love present to you now.

Below we offer a map of CancerChoices’ guidance with suggestions of where you can find information about your options as well as support in making the choices that are right for you now.

Thank you for letting CancerChoices be a guide by your side.

Take care,

Laura

Laura Pole, RN, MSN, OCNS Senior Clinical Consultant

Navigating as the end of life nears

Take care of difficult emotions and physical distress first

Learning that your cancer is advancing and you are nearing the end of your life can bring up many different feelings. It’s not uncommon to feel shock, fear, anger, disappointment, sadness, and/or guilt. Feeling this way hurts. But going into and through the difficult emotions and improving your physical comfort is important for being able to plan and spend the time you have left in the most meaningful way possible.

So, before we even look ahead, let’s stop now and take a moment to breathe slowly and deeply. With each inhalation, take in peace and comfort. With each exhalation, release what you don’t need. Take a few more of these slow, deep breaths. For now, breathing in and out one breath at a time is all that matters.

Now notice what you feel. Name the feelings and ask them what they are here to tell you. Listen compassionately. Make note of what the feelings have to say to you.

Once you have an idea of what you need, take care of the physical and emotional feelings of distress first. Rest assured that there are guides, sherpas so to say, who can shine a light on the people and resources who will support you and your loved ones during this time. 

Some sections of CancerChoices will help you take care of difficult emotions and physical distress common during this time. 

You may find the section on Distress within this document helpful.

Advanced cancer may cause distressing symptoms. Treatments may also cause side effects and symptoms.

Get clear on what matters now

Once you’ve tended to your difficult emotions and physical distress, you may be in a better frame of mind to ask “What matters most to me now?” When exploring how you want to spend your life now, the answer may be your best guide to how to live, which treatments to use, and perhaps equally important which treatments to stop. This exploration is actually one of the 7 Healing Practices and a good place to start in caring for yourself.

Learn about your choices

Sometimes, when treatments are no longer working and cancer is progressing, doctors may say something like: “I’m sorry, there’s nothing more that we can do…” Once they get that far in the sentence, people usually don’t hear the rest: “… to treat your cancer.” The statement might end there, or it may include the following most important part of the message: “but we can manage your symptoms and improve the quality of your life. We will continue to be involved in your care.” 

Even if you didn’t hear this last bit from your doctor, rest assured that options are available to help you make the most of this time of your life, and as comfortably as possible. Your team may bring in new members who are experts in comfort care.

Some people decide they don’t want to take any more treatments to try to stop the cancer. When they stop conventional treatmentthe cancer care offered by conventionally trained physicians and most hospitals; examples are chemotherapy, surgery, and radiotherapy, they might actually feel better because treatment side effects are no longer a burden.

Other people may want to “fight until the end” with whatever conventional treatments the doctor will give them, even if the likelihood of good results is not high. Some may also want to “leave no stone unturned” and pursue treatments beyond conventional therapies, including experimental therapies. 

Whether you choose to stop or continue treatments, palliativerelieving pain or suffering without dealing with the cause of the condition; palliative care is specialized medical care that focuses on providing patients relief from pain and other symptoms of a serious illness care can be helpful, and we strongly urge you to consider this option. Some integrativein cancer care, a patient-centered approach combining the best of conventional care, self care, and evidence-informed complementary care in an integrated plan oncology programs can offer effective help with symptom management. Some even report extended survival among people with advanced cancer.

If cancer is advancing and no longer responding to conventional treatment, you may want to dig a little deeper to see if any non-conventional or experimental therapies might affect the cancer directly. Medical advocates can do some of that digging for you. And they can coach you on how to pass on their findings and recommendations to your oncologist.

Make and integrate your choices

You may choose to explore one or more of several options.

Even when cancer is not curable or controllable, healing is still possible.

Healing is the recovery of wholeness, even in the midst of serious illness. You may find great comfort and encouragement as you see that the work of healing continues for as long as you live. Even after death, your work of healing may help your loved ones with their own healing. In this handbook you may learn about what’s possible if healing is what matters most to you now.

If you’re finding it difficult to make decisions about whether to continue or stop conventional treatment, you may find some guidance in the Review section of this handbook.

If no good conventional treatment options are available, some people look to see if alternative therapies might help. Find help with exploring whether or not pursuing alternative therapies is right for you.

Clinical trials

Some people with advanced cancer consider clinical trials hoping to fight their cancer or to provide research information that may benefit others with cancer.

Learn more about clinical trials

Another important consideration is whether any care and treatments you are interested in pursuing are affordable and accessible.

Advance care planning

Advance care planning is a process in which you learn about your choices, then decide how you wish to be cared for as you are nearing the end of your life. We strongly encourage you to make your wishes known to your doctor, the person who will make decisions if you can’t (your healthcare agent), and your loved ones. We advise completing this process before you have a crisis in which you may not be able to communicate your wishes and make decisions for yourself. 

Self care and complementary therapies you can do now

7 Healing Practices

Healing practices can be vitally important now. They may not only help with the difficult emotions and physical distress you might be experiencing, but also help you identify and work on healing what remains to be healed in your life.

You may not be able to do some of these practices to the extent you once could, yet they may still be very helpful. For instance, you may no longer be able to do aerobic exercise, but you may be able to do gentle yoga or qigong. If you begin with Exploring What Matters Now, the other healing practices that will serve you best will become apparent.

Complementary therapies

Either alone or in addition to self-care healing practices, complementaryin cancer care, complementary care involves the use of therapies intended to enhance or add to standard conventional treatments; examples include supplements, mind-body approaches such as yoga or psychosocialtherapy, and acupuncture therapies such as supplements, mind-body approaches, and more might help you now. Many of these therapies help ease difficult emotions or help manage symptoms such as pain.

You may already have a team of complementary therapists lined up from when you were originally diagnosed. This might be a good time to get in touch with them and see if they have something to offer you now. More and more hospice and palliative care programs are offering complementary therapies—consider asking about this if you are interviewing potential programs.

If you are considering complementary therapies for the first time, you may be wondering how you can choose which are likely to be helpful for you. Ideally, an integrative oncology doctor, nurse, navigator, or advocate would be able to guide you in choosing therapies that are right for you at this time.

If you don’t have access to an integrative oncology professional, then think about what you want complementary therapies to help with: treating cancer, balancing your body terrainthe internal conditions of your body, including nutritional status, fitness, blood sugar balance, hormone balance, inflammation and more, and/or managing side effects and symptoms. You can browse our reviews of complementary therapies for those effects.

For instance, if you would like to know which therapies might help control pain, use the filters on the left side of the page. Look for the “Symptoms” filter and select “Pain.” A list of therapies helpful for managing pain will be displayed. These will include only the therapies that we’ve reviewed so far, and only those that have published evidence of benefit for relieving pain.

Similarly, if you want to know which therapies are useful for someone with advanced cancer, use the “Cancer types” filter, selecting “Advanced cancer.”

You can also browse our handbooks on symptoms and side effects to see both which therapies might provide some relief and how experts manage a symptom or side effect.

Traditional medicine systems

Traditional medical treatment systems come from the accumulated knowledge, skills and practices of indigenous cultures around the world. An example is traditional Chinese medicine (TCM).

Some TCM therapies are helpful with improving quality of life, managing symptoms, and enhancing conventional treatment effects for those choosing to continue with these treatments. In the West, TCM is commonly integrated into cancer care.

Learn more about traditional medicine and how to find practitioners.

Get more help

You may be saying to yourself, “This is great that there’s all this information here, but I’d like some help navigating this site.” or “Well all this written information and guidance is helpful, but I also need more individualized one-on-one help.” The good news is that living and breathing guides can lead you through this website, or the bigger unfamiliar territory of cancer.

We’re with you

You are not alone. We’re here to help and connect you with resources that will benefit you and those you love.

Our partners at Healing Circles are also available to invite you into a small group for support.

Personal story

Laura Pole, RN, MSN, OCNS: Over the many years I’ve worked as a hospice and palliative care nurse, I’ve witnessed many people open the gifts of love and death that came in packages as varied and unique as the person receiving them. I’ve learned that though the prognosis is short, time also seems to expand to accommodate an unfolding, moving through, and resolution of many choices. 

When learning that the end of life is near, I’ve seen some people choose to spend their last days far away from home, taking conventional or alternative therapies in a hospital or clinic. I’ve seen others go into hospice care and live and die at home with treatments providing comfort. Others, though few, choose to end their lives at a time of their choosing, through their own self-deliverance or with medical aid in dying. Mostly, I’ve seen people move through phases. Starting with somewhat “aggressive” life-saving care in the hospital or at an alternative therapy clinic. Then they weaving in palliative care for symptom management while still perhaps receiving chemotherapy. And they stop all aggressive treatment and elect to receive comfort care at home. I’ve seen many use complementary therapies and healing practices all along the way. There is no right or wrong way to spend the end of one’s life—there’s your way. And exploring, getting clear, and being true to your way can be one of the greatest and most meaningful accomplishments of your life.

I’ve seen fear come up for many at this time. I’ve learned that fear can be a great illuminator if we choose to interact and be patient with it. As a caregiver, I’ve learned not to be afraid of nor help cover up someone’s fears with medications and platitudes. But to just be present with the fear and remind the person that they’re not alone. That they have what they need to move into and through the fear, if they choose.

Take Dave, for instance. Dave was forty-something, had a wife and 2 adult daughters who adored him and he adored them. He had lung cancer and was told he would likely not live much longer. His doctor referred Dave to our hospice and I went out to do our assessment and see if he was eligible for our services. As he sat there with his oxygen machine hissing and puffing beside him, he said that he was very afraid that the cancer would smother him. If his breathing or heart stopped, he would want to be resuscitated and taken to the hospital and put on a ventilator to keep him from smothering.

Weeks and even months passed. Dave continued to need oxygen and the fear was still there, but he was taking care of unfinished business and was surrounded by his loving family and friends. An incredibly kind and giving volunteer hospice nurse, Margaret, was a steady presence for Dave for all these months. One night, Dave did stop breathing, and Margaret did mouth-to-mouth resuscitation while his wife called the EMS.

Dave started breathing and awoke, and Margaret said “We’ve called the ambulance to take you to the hospital.” Dave said, “Cancel it—I’ve seen death and I’m not afraid.” 

Dave’s daughter Sue, who lived out of town, had been driving hours to get home to be with her Dad. By the time she arrived, Dave was again unconscious, but now breathing more comfortably than he’d breathed in months. I sat with Sue on a small sofa in Dave’s room. As we talked quietly, something told me to have Sue go to her Dad’s bedside. Just as she did, Dave breathed his last quiet breath. No more fear. The grace of whatever he’d seen replaced the fear with peace.

I know this peace is possible. I wish it for you.

Guidance at each phase of cancer

Authors

Laura Pole, RN, MSN, OCNS

Senior Clinical Consultant
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Laura Pole is senior clinical consultant for CancerChoices. Laura is an oncology clinical nurse specialist who has been providing integrative oncology clinical care, navigation, consultation, and education services for over 40 years. She is the co-creator and co-coordinator of the Integrative Oncology Navigation Training at Smith Center for Healing and the Arts in Washington, DC. Laura also manages the “Media Watch Cancer News That You Can Use” listserv for Smith Center/Commonweal. In her role as a palliative care educator and consultant, Laura has served as statewide Respecting Choices Faculty for the Virginia POST (Physician Orders for Scope of Treatment) Collaborative as well as provided statewide professional education on palliative and end-of-life care for the Virginia Association for Hospices and Palliative Care.

For CancerChoices, Laura curates content and research, networks with clinical and organizational partners, brings awareness and education of integrative oncology at professional and patient conferences and programs, and translates research into information relevant to the patient experience as well as clinical practice.

Laura sees her work with CancerChoices as a perfect alignment of all her passions, knowledge and skills in integrative oncology care. She is honored to serve you.

Laura Pole, RN, MSN, OCNS Senior Clinical Consultant

Nancy Hepp, MS

Lead Researcher and Program Manager
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Ms. Hepp is a researcher and communicator who has been writing and editing educational content on varied health topics for more than 20 years. She serves as lead researcher, program manager, and writer for CancerChoices. Her graduate work in research and cognitive psychology, her master’s degree in instructional design, and her certificate in web design have all guided her in writing and presenting information for a wide variety of audiences and uses. Nancy’s service as faculty development coordinator in the Department of Family Medicine at Wright State University also provided experience in medical research, plus insights into medical education and medical care from the professional’s perspective.

Nancy Hepp, MS Lead Researcher and Program Manager

Miki Scheidel

Co-Founder and Creative Director
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Miki Scheidel is Co-founder and creative director of CancerChoices. She led the effort to transform Beyond Conventional Cancer Therapies, the prior version of CancerChoices, to its current form. Miki and her family were deeply affected by her father’s transformative experience with integrative approaches to metastatic kidney cancer. That experience inspires her work as president of the Scheidel Foundation and as volunteer staff at CancerChoices. She previously worked with the US Agency for International Development and Family Health International among other roles. She received her graduate degree in international development from Georgetown University, a graduate certificate in nonprofit management from George Mason University, and a Bachelor of Arts from Gettysburg College.

Miki Scheidel Co-Founder and Creative Director

Last update: July 19, 2022

CancerChoices provides information about integrative in cancer care, a patient-centered approach combining the best of conventional care, self care and evidence-informed complementary care in an integrated plan cancer care. We review complementaryin cancer care, complementary care involves the use of therapies intended to enhance or add to standard conventional treatments; examples include supplements, mind-body approaches such as yoga or psychosocial therapy, and acupuncture therapies and self-care lifestyle actions and behaviors that may impact cancer outcomes; examples include eating health-promoting foods, limiting alcohol, increasing physical activity, and managing stress practices to help patients and professionals explore and integrate the best combination of conventionalthe cancer care offered by conventionally trained physicians and most hospitals; examples are chemotherapy, surgery, and radiotherapy and complementary therapies and practices for each person.