For Any Cancer Diagnosis
Q. I have stage 4 cancer and after 5 years of receiving chemotherapy, I'm being told there are no more treatment options for me. Because I survived so long with a terminal diagnosis, some people in my family don't seem understand how serious this is. How can I help them understand?
I am sorry that you have been told that there are no other options to treat your cancer. It seems that you have been on quite a journey over the last 5 years which likely took an incredible amount of courage and energy. It’s possible that your brave outlook allowed your family to think that the cancer would remain under control for a long time to come.
It is not uncommon for people to deny the seriousness of cancer, including people with cancer as well as their loved ones. While denial is often thought of in a negative way, it can be a useful mechanism that protects us from the sometimes intense emotional pain involved with being diagnosed with cancer. Perhaps the indifference that you see in your family members has a component of denial that has protected them in some way.
I’d recommend developing a strategy to communicate your feelings and concerns to your family. A a social worker, nurse, doctor, clergy member, or friend may help to facilitate a discussion with your family. Family members might benefit from meeting with you and one or more of these professionals to talk about your cancer as it presents currently and what the expectations are going forward. You can then begin to discuss with them what support you need.
The National Hospice and Palliative Care Organization offers practical information for those living with serious illness.
I hope that you have found this to be helpful, and I welcome you to talk further about your concerns with a CancerCare social worker.
Q. My dad has terminal cancer and he is currently at home. He has no insurance, but Medicaid is pending. We're trying to get hospice or some support. What can I do?
It must be a very difficult time for your family and you are to be commended in seeking out resources and support services that are available to assist your family.
Hospice is paid for through the Medicare or Medicaid Hospice Benefit and by most private insurers. If a person does not have coverage through Medicare, Medicaid, or a private insurance company, hospice will work with the family to make sure needed services are provided. In order to receive hospice services, your father’s doctor will need to make a referral to a local hospice provider. You may also contact a local hospice to find out what steps you should take.
The National Hospice and Palliative Care Organization (NHPCO) offers information and resources about end-of-life and hospice through its Caring Connections website. The Caregiver Resource Directory also can provide you with extensive information. We’ve created a fact sheet, Caregiving at the End of Life, that provides guidance as you care for your father.
It’s important that you continue to follow-up with his Medicaid application, as benefits will be retroactive to the date when he applied and can be used to pay any medical bills that may be incurred during the application period. CancerCare’s fact sheets, Getting to Know Your Entitlements and Sources of Financial Assistance, may also be helpful in finding resources.
If you continue to have difficulties finding hospice services for your father, please call us at 1-800-813-4673 (HOPE) to speak with an oncology social worker.
Q. I am currently receiving treatment for my second recurrence of cancer. I have no family or friends close by, and my husband works so if I become very sick I will be home alone most of the time. How will hospice be able to help us? I know that they can't be here 24/7. Any idea what my options will be?
The focus of hospice is on the care and comfort of the individual and his or her family, not cure. Usually hospice care is provided in the patient’s home, but hospice services are also provided in hospitals, nursing homes and hospice centers. The hospice team can include: the patient’s attending physician or a hospice doctor, social workers, nurses, home health aides, medical specialists, counselors, clergy, and volunteers. The goals of hospice care include managing any pain or symptoms that arise and providing emotional, spiritual and practical support to the patient and family.
When hospice is needed, you should be able to get up to 20 hours of home health aide services through hospice care (depending on the state where you live, assistance can also be called CNA hours). A common dilemma is figuring out how to supplement the services hospice offers if additional hours are needed. While there is not an easy answer, I have a few suggestions:
- Ask if the hospice has volunteers who can visit a few times a week as they often have volunteer programs.
- If you are connected with a faith community, ask if they have staff or volunteers from the congregation who could help.
- Check with the home care agency that your hospice uses to see what additional hours might cost. For additional information, see Hiring In-Home Help.
- Inquire through the hospice agency for recommendations of private-hire caregivers who have cared for other hospice patients and are experienced with providing this type of supplemental care.
- Remember that if your needs increase, hospice can arrange short-term in-patient stays until your needs decrease and you can return home.
- I know you mentioned not having family close by, but for others who might, family members could explore Family Medical Leave Act (FMLA) options.
For additional information about hospice care, visit the National Hospice and Palliative Care Organization’s website, Caring Connections.
Q. What is the difference between hospice and palliative care?
The goal of hospice care is to provide pain and symptom management, while also focusing on the person’s quality of life. The hospice team includes physicians, nurses, social workers, pastoral counselors, home attendants and volunteers and they explore the medical, emotional, spiritual and psychological impact of illness and possible death with the patient as well as his/her loved ones. The team also provides continued supportive services to the family in the form of grief and bereavement counseling when needed. The majority of hospice care in the United States is provided in the home, and services are also available in nursing homes, hospitals and private hospice facilities.
The World Health Organization defines palliative care as “an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and assessment and treatment of pain and other problems, physical, psychosocial and spiritual.” Sounds a lot like hospice, doesn’t it? So then, what is the difference?
The difference has to do with the medical definition of chronic vs. end-stage illness and the insurance benefits structure. For a patient to be referred to hospice and receive Medicare, Medicaid or private insurance hospice benefits, a doctor must attest that, in their best estimation, a patient has 6 months or less to live. Palliative care referrals have no such requirement. A patient who has a life threatening illness, however not considered to be within that 6 month life expectancy window, can now be referred for palliative care. So, as with hospice care, the focus with a palliative care referral is symptom and pain management. Thus, all hospice care is palliative but not all palliative care is hospice care.
Finally, hospice and palliative care is now a medical and boarded specialty, requiring physicians to pass a licensing exam in order to be considered a Hospice/Palliative care doctor.
For more information on hospice and palliative care, please visit the following websites:
For Lung Cancer
Q. I have stage 4 non-small cell lung cancer and now am receiving Tarceva. I'm trying to prepare for the future by exploring hospice and want support for my husband. Do you know what kind of pain I might expect?
There is no easy means of determining how late-stage lung cancer may progress. At times the process can be relatively benign and pain free; at other times, it may cause the person with cancer to deal with discomfort and pain. You have already identified one of the most appropriate resources for managing your situation – hospice care.
Hospice provides some of the best palliative care available and focuses on the patient’s physical, emotional and spiritual comfort. We encourage patients and family members dealing with late-stage cancer to contact local hospices as soon as possible. This gives patients and their loved ones the opportunity to develop a relationship with staff and ask questions (such as how pain and symptoms can be managed) and to determine what services could be helpful. Connecting with hospice often times results in peace of mind for both patient and family members, as needs can be assesed, questions answered, and important next steps identified.
For more information about hospice and end-of-life care, please consult the National Hospice and Palliative Care Organization’s website, Caring Connections.
Another resource is our publication, “Caregiving at the End of Life”. And remember that CancerCare’s professional oncology social workers assist lung cancer patients and their loved ones in situations similar to yours and can help them navigate their way through end of life care.
Q. I am 67 years old and have had non-Hodgkin's lymphoma for 7 years. I have decided not to receive further treatment. What will happen as I progress? Will I have pain?
You have made a difficult decision to change the focus of your treatment from curative to palliative. No doubt this decision was made after careful consideration and consultation with your doctors and members of your support team.
Most people report that they are not as fearful about dying as they are about the possibility of experiencing pain and distress. There are many ways to address physical pain and you can learn specific ways to describe your pain to your treatment team in our booklet, Controlling Cancer Pain: What You Need to Know to Get Relief.
Palliative care may be available through your local treatment center, or may be accessed through hospice. Palliative care and hospice services are provided by medical professionals who have an expertise in managing symptoms, social workers who provide support you and your family, and chaplains who provide spiritual care. Getting to know your team of health care professionals early after you decide to pursue palliative treatment will allow them to get to know you and your preferences, as well as how you respond to pain management techniques. The National Hospice and Palliative Care Organization’s Caring Connections website offers information about living with a serious illness and pain management. We offer a fact sheet, Your Health Care Team: Your Doctor is Only the Beginning, that outlines professionals who may be available to help you.
Hospice care recognizes that for some people with cancer, a cure is not possible. The focus of hospice services is to create the best quality of life for a patient by treating his or her physical, emotional, and spiritual needs, as well as supporting family needs.
While your care at this time is palliative in nature, the importance of hope can not be dismissed. Hope is that balance between positive attitude and expectations for the future. Hope can continue to nourish you, and you can nurture hope through the way in which you continue to live your life. Settling old problems and practical affairs will give you peace of mind. Make plans with family and friends as you are able to continue to engage in the activities that you enjoy. Focusing on the purpose and goals of each day will set up an achievable plan and completing what you can each day will give you satisfaction that you have done your best.
Q. My 90-year-old grandmother was just diagnosed with lymphoma, but was told that because it is at an advanced stage, no treatment will be done. What should we expect?
Lymphoma is the term used to describe cancer of white blood cells, called lymphocytes, which are a crucial component of the immune system. As with any cancer, there are important factors in determining a patient’s prognosis. These include the type of cancer, the stage of the cancer, the age of the patient and the patient’s general health. It is also important to consider whether the cancer is a new diagnosis or whether it has recurred.
While it is not possible to tell you exactly what to expect, it is important to begin to plan for her care. Talk with her doctor and find out more details. For guidance, please read our publications, Communicating With Your Health Care Team and Doctor, Can We Talk?.
It will be helpful to develop a plan that includes all available family, social, and medical supports to care for your grandmother in body, mind, and spirit. You may also want to discuss with your grandmother what her wishes are regarding her care. It is important to have information about your grandmother’s health insurance or other coverage she may have and what medical and supportive care services they can provide during this time. Hospice should be considered and can provide support and services if your grandmother’s needs increase.
The Leukemia & Lymphoma Society provides specific information about lymphoma and offers support services provided through their local chapters.