Comprehensive Guide to End-of-Life Care for Terminal Cancer Patients
This article consists of information that explains what you and your family can expect towards the end of life and your options.
You and your family may wonder what to expect in the immediate future. As people have different symptoms and have different needs at the end of life, we can’t tell you exactly what will happen. This resource will help you understand some of the realities you may encounter and the choices available to you at the end of your life.
The primary purpose of this content is to help you understand your treatment options. By understanding them, you can make informed decisions about your end-of-life care.
This article is developed using official insights from Cancer Horizons, a support community for cancer patients that aims to grow knowledge regarding different categories of cancers, understanding oncology, and especially the physical and mental needs of cancer patients. It is a community of 100,000 strong supports in the form of caregivers and specialized nurses.
A terminal illness is one in which the person is expected to die within a short period of time. These professionals should discuss the prognosis, treatment options, risks and benefits, and how to mitigate pain and symptoms.
Your doctor or nurse will talk with you about your end-of-life care. You may also be referred to another health care provider for more information.
There may be times when you cannot make medical decisions but want to stay in control, no matter how sick you are. By law, we are required to provide that information to a person with decision-making authority on your behalf. That person is known as your health care agent (also known as your agent or a representative)
You designate the health care agent on the Healthcare Proxy form. The Healthcare Proxy form is a legal document that designates the person you want to make medical decisions for you if you cannot do so. We recommend that you fill out the Healthcare Proxy form to designate the person who knows your wishes. We also recommend that you discuss your wishes with your healthcare agent in advance so that he or she can speak for you.
Palliative care is a way of caring for patients and their families. Palliative care specialists are health care professionals who are experts in helping people improve their quality of life in the face of life-threatening illnesses. Unlike terminally ill care, which is for people who are at the end of their life (see the “Terminal Care” section below), palliative care can begin at any time during an illness and can be offered alongside chemotherapy and other treatments.
Your cancer doctor can often offer palliative care, although sometimes people need more specialized care. In that case, your GP may consult the hospital’s hospice team. The hospice team includes doctors, nurses, nurse practitioners, social workers, chaplains, and others. The team works closely with your cancer caregivers to make you feel comfortable and improve your quality of life.
You and your doctor might determine that the goal of your care may no longer be to treat your cancer but to relieve your symptoms. By shifting the priority to keeping you comfortable first, you and your family can focus on the quality of time you have left. It may live for several days, weeks, or months.
Terminal care begins the moment a person has six months or less to live. The goal of terminal care is to offer comfort and support while stopping treatments intended to cure an illness. Terminal care can be offered at home or in a health care institution.
Hospice goals are:
- Help you live the last stage of your life comfortably.
- Help you and your family deal with the resulting changes.
- Help you have a peaceful death.
If your cancer is no longer responding to treatment, and you want to focus on managing symptoms and improving your quality of life, you might consider terminal care. You may also want to consider it if the treatment’s weight is greater than the benefits it offers you. Starting terminal care is your choice. Your doctor may consider terminal care with you and your family because it may best meet your needs at that time.
This type of care is provided by a team of healthcare professionals who specialize in it. A specialized doctor is in charge of your plan of care. Nurses and home health aides participate in your daily care. You can get help with your physical needs, food, and the maintenance of your home. As needed, you can see a chaplain, social worker, and physical therapist. Terminal care can also include volunteers who spend time with you.
You can get care as an inpatient or outpatient, including:
- At home
- In an assisted living facility
- In a convalescent home
- In a long-term caregiving facility
- In a full-fledged hospital that specializes in palliative care for people diagnosed with cancer
Medicare, Medicaid, or private insurance may cover end-of-life care expenses. However, sometimes policies vary, so check with the institution that insures you. Medicines to control your symptoms are covered as part of your care.
If you are admitted as an inpatient to a hospice unit, terminal care is provided 24 hours a day. If you receive terminal care at home, you will most likely not have 24-hour care. The hospice team will help your family members take care of you. To support you with any issues you may have, there is a nurse on call 24 hours a day and to give you or your family advice over the phone.
Usually, a home health aide is given several days a week for a certain number of hours. If you need extra help at home, you may have to pay for it out of pocket. If you decide to receive end-of-life care, your nurse will tell you what hospice does and does not offer. Ask your case manager about terminal care available in your area.
Other people involved in your end-of-life care
Many other top specialists help make your end-of-life care as calm and meaningful as possible.
Social workers offer emotional support and guidance. You and your family may have to make end-of-life care decisions. This cannot be easy. You can trust the social worker to help you think through what you want and determine your family’s values and goals.
The social worker can also:
- Provide emotional support regarding issues such as change and loss.
- Strengthen your skills and those of your family to cope with the situation.
- Identify specific concerns that you and your family members have.
- Help communication between family members and members of the health care team.
- Provide referrals to grief or support groups or resources in the community.
- Guide family members, even children.
Usually, the case managers are registered nurses. They help you and your family plan for discharge, as well as:
- Arrange for services such as home care, terminal home care, or placement in a nursing facility, as needed.
- Arrange for nurses, physical therapy, and social worker visits, if needed.
- Arrange for medical equipment, if necessary.
- Help you figure out what insurance does and does not cover.
They can treat you as an inpatient or outpatient. If you are in the hospital, they work closely with your health care team.
It is possible that while suffering from a severe illness, and particularly if death is approaching, spiritual and religious concerns may arise. You may be a religious person or a spiritual person without being religious. Whatever your situation, you may find it helpful to support you regarding your beliefs and along the spiritual journey. Spiritual needs that arise at the end of life could be, among others:
- Talk about the value and worth of your life in sacred terms.
- Take part in prayers or rituals.
- Listen to scriptures or sacred family texts.
- Seek comfort and a foundation in sacred stories.
- Seek forgiveness or confess resentments.
- Connect with religious communities.
Chaplains may offer prayers, rituals or offer the presence of a comforting figure.
Chaplains can assess your needs as you and your family cope with your death. Community clergy are also available to assist with various religious traditions. Hospitals can arrange for a clergyman of your religion to visit you at your request.
The care centers also offer therapy that complements the rest of your care. This therapy is for people who have cancer and their families. They are non-invasive, reduce stress, and help control distress.
Many therapies help manage pain, nausea, fatigue, anxiety, depression, lack of sleep, and other symptoms. The service guides you and your family to receive the most appropriate and effective therapies. Among others, they offer massage, relaxation techniques, acupuncture, and hypnosis. In some cases, family members are taught to soothe their loved ones by gentle strokes or guided imagery techniques.
Dealing with cancer is difficult. That’s why communicating with your family, friends, and health care team can help you cope.
As you become more dependent, your family and friends can help you. While it may be difficult, you may find it helpful to start a conversation with your family and friends regarding your wishes and feelings regarding the end of your life. This can allow you to share emotions, tears, and laughter. It can also allow you to express things that you have always wanted to say.
Talking openly about the end of life and death also helps you and your family and friends make plans, which can be extremely helpful. The practical guide could cover many aspects, including instructions for burial and grief, and provide information on financial matters.