End of Life Care

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Planning for the end of your life is tough. Whether you’ve just learned you have colorectal cancer or whether you’ve been fighting hard for years, you may not want to think about death. 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

The National Comprehensive Care Network publishes Advanced Cancer and Palliative Care that includes information about preparing for end of life care, practical assistance for caregivers, and treatment guidelines for managing palliative care. It can be downloaded in PDF format or ordered in print from NCCN.

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.