When patients have a sense of mutual understanding, caring, and trust with their physicians they form a therapeutic alliance that makes a difference in care at the end of their life.

When the therapeutic alliance was strong, patients were less likely to spend time in an intensive care unit in the last week of life.  They also had better emotional acceptance of their terminal illness. Read the rest of this entry »

When advanced cancer patients talk with their doctors about preparing for the end of their lives, they have a better quality of life as death approaches.  They aren’t more likely to be depressed, and they receive less aggressive care in the last week of life.

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. Read the rest of this entry »

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

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.

Advance directives allow you to document your personal wishes and goals for medical treatment at end of life. You also pick people who can act for you if you are unable to make decisions, so that your wishes can be carried out the way you want.

They are legal documents which may vary from state to state. Advance directives are not just for people with cancer or people who are dying. Everyone should have them in place so that good decisions can be made in medical emergencies.

You can download advance directives for your state and instructions for filling them out from Caring Connections.

• Medical power of attorney allows another individual to make decisions for someone who is not physically capable of doing so. This may also be known as durable power of attorney for health care, health care agent, or health care proxy.
• Power of attorney gives an individual the right to act on behalf of another person in financial or real estate issues.
• A living will provides information about how a person wants to be treated medically if the person cannot speak for himself or herself. It may also be referred to as a directive to physicians, healthcare declaration, or medical directive. Living wills tell families and health care staff what kind of life-sustaining care the person wishes to have such as cardiopulmonary resuscitation, mechanical ventilation, artificial nutrition and hydration, or dialysis.
• DNR or Do-Not-Resuscitate orders must be written by a physician, although they can be written at the request of patient or family. A person with a valid DNR will not be given cardiopulmonary resuscitation (CPR) if their heart or breathing stops. DNR orders can be written for hospital care or for patients who are being cared for at home.

Legal requirements for completing and changing advance directives vary according to state law. Your state also defines who can witness them and whether they must be notarized.

Living Wills and medical power-of-attorneys (health care proxy) cannot go into effect until a doctor certifies that you are unable to make your own medical decisions. If your condition improves, your health care proxy can no longer speak for you. Emergency medical technicians cannot honor living wills or health care agents. By law, if they are called, they must stabilize an individual and transport him to a health care facility.

If you or your loved one has a DNR signed by a physician, be sure that it is put where the emergency medical personnel can see it or those caring for the patient at home can find it quickly and easily.

Five Wishes

Five Wishes™ is a document produced by Aging with Dignity that lets your family and health care team know how you want to be treated if you are seriously ill and unable to speak for yourself. It is a valid legal advance directive in 40 states. Where it is not yet a legal document, it can be attached to the formal directive.

More than just a legal document, it helps families talk about critical illness and dying and patients understand what their choices for care are.

Five Wishes lets your family and doctors know:

1. Which person you want to make health care decisions for you when you can’t make them
2. The kind of medical treatment you want and don’t want
3. How comfortable you want to be
4. How you want people to treat you
5. What you want your loved ones to know

You can read, but not copy and fill out, a copy of Five Wishes. You can order Five Wishes in English or Spanish or call (888) 594-7437.

Where Can You Go for More Information

The Consumer’s Toolkit for Health Care Advance Planning developed by the American Bar Association has questionnaires to help you think about advance directives like choosing a health care agent, deciding on the care you want, and what you would like your family to know after your death. The Toolkit does not create advance care directives, but helps you plan what is important to you.