“I don’t want my passing to be a burden on my family – I feel better if I have things organized for them.  I guess I still want to prove I have some control of future events.”

Many women living with metastatic breast cancer experience a sense of empowerment and relief when they take practical steps to deal with future issues.  Drawing up a will that states your wishes for the care of your children, what to do with your possessions or the planning of your funeral can put some persistent worries to rest.  Some women feel peace after leaving instructions for their care in the event that they can no longer make decisions for themselves.

You can consider writing advance directives (also called “future directions”) if you are concerned that you may not be able to communicate with your caregivers in the later stages of your diagnosis and consequently may not be able to participate in treatment or life decisions.  Advance directives let you decide how you want to be cared for in different situations, and if necessary, who will act on your behalf. There are two kinds of advance directives – living wills and powers of attorney for personal care.

A living will documents your decisions about treatment and personal care that you want or don’t want to receive. Your living will can also contain your decisions on housing and living arrangements, on nutrition, clothing, hygiene and personal safety.  A living will is used only if you become incapable of making or expressing decisions on your own behalf in the future.  It can be changed at any time.

Your living will can include your decisions about treatments you will accept or refuse in emergency situations or at the end of life.  You may want to discuss a “Do Not Resuscitate (DNR)” order with your health care team.  A signed DNR means that you would prefer to die a natural death; i.e., if your heart stops beating, you do not wish for medical personnel to try and save them using CPR (cardiopulmonary resuscitation).It is important to discuss this topic with your family and your health care team.

A power of attorney for personal care (also called a “proxy directive”) is a legal document that appoints a specific person or persons to make or express your health care and personal care decisions for you, if you are unable to do so. The person you appoint is often called the substitute decision maker. If your wishes cannot be followed or if you don’t give detailed instructions, your substitute decision maker must act in your best interests and try to make the same decisions you would make in the same situation.

Legislation surrounding advance care directives and the names of these directives vary by province / territory.  We recommend you consult with a lawyer if you are planning to create an advance directive.  Call Willow for more information.

Estate planning means organizing your financial and personal assets and deciding how you want those assets to be distributed when you die.  An up-to-date will ensures that your wishes are carried out.

Make sure your important papers (insurance, credit cards, deeds, etc.) are organized and in a secure place.  Whether you keep them at home or in a safety deposit box, make sure that someone knows where they are and how to access them quickly.

For information about wills, insurance, taxes, and other such topics, talk to your lawyer or financial advisor.

End-of-life care (often called hospice care or palliative hospice care) is supportive care provided to people in the final stages of their illness.It provides comfort and improved quality of life for patients and their families during the time of dying and death and for a bereavement period.  End-of-life care is directed towards meeting physical, psychological, social and spiritual needs.  It also encourages involvement of loved ones in planning treatment and care.  A team of family, friends, health care professionals and volunteers can provide end-of-life care in any setting – at home, in hospital, in nursing homes or in a hospice.

While services may vary from organization to organization, the range of services provided includes:

  • At-home nursing care
  • Respite care and caregiver relief
  • Complementary therapies
  • Trained volunteers to visit and provide support
  • Help with practical needs like shopping or appointments
  • Counselling to help adjust to pain or loss
  • Ongoing bereavement support after the death of a loved one

You will need to find out who pays for aspects of end-of-life care in your province /territory and what additional financial assistance may be available to you. Coverage varies across the country and often depends whether care is provided at home or in the hospital.

Provincial and territorial health plans usually pay for end-of-life care provided in hospitals. They also cover drugs, medical equipment and other supplies provided by the hospital. Residents of long-term care facilities are usually required to pay for some of their care.

End-of-life care provided at home may be paid for by your provincial /territorial health plan as part of a home care program. These plans do not always include the cost of drugs and equipment used at home and some plans limit the number of paid hours for support services. You may have private insurance that covers these activities or choose to use your own money. There are social agencies, local cancer societies and other organizations that might be able to provide some financial assistance or free services.  Call Willow for help understanding how to access end-of-life care where you live.

Palliative and End-of-life Care Resources

The Canadian Virtual Hospice (www.virtualhospice.ca) provides support and information about palliative and end-of-life care to patients and their families. Visit their website to find information on a range of palliative care topics, as well as discussion forums. The Ask a Professional feature allows you to ask a question to an inter-disciplinary team of palliative care experts and receive a personal response, free of charge. The site also includes listings of palliative care associations, drug/benefit programs, home care programs, residential hospices and other programs and services.

If you have any questions about palliative care in general, you can also call the Canadian Hospice Palliative Care Association at 1-800-668-2785.

If you are living with metastatic breast cancer, it may be difficult for you to think of a time when you won’t be here.  You may not want to preplan your final arrangements.  Or, it may bring you peace of mind to leave instructions for your loved ones. Preplanning is a choice and the choice is yours.

Many women and their families find comfort in making their funeral or celebration of life arrangements.  The act of planning and organization allows for conversations about favourite memories, shared experiences and a reflection of their journey through life.  Some women ask that their lives be celebrated rather than their departures mourned.  Others prefer quiet acknowledgement of their lives and their passing.