No matter where we are in life's journey, it's never too early to plan ahead. Sometimes we put off planning for events that we find depressing or unsettling, but it is better to have a plan in place than to wait until an unexpected emergency or turn of events occurs.
Most people have strong feelings about care at the end of life. They worry about how their decisions will affect their families. Or, sometimes, what decisions their families would make for them if they were unable to communicate their own wishes. They also want to be sure that their doctors follow through with the type of care they prefer. Most want emotional support from people they love and trust, and some want additional spiritual support as well.
Take the time to think about your or your loved one's values and how they may relate to end-of-life care. Each person has an idea of what constitutes quality of life based on beliefs and values like family, independence, spirituality, mobility and mental capacity. It is important to consider how you define quality of life for yourself should the need arise to choose medical treatment and make end-of-life decisions.
- Do you want to be near family, at home, in the hospital?
- Do you want life sustaining treatments?
- Who do you want to take care of you?
Having a family discussion before a serious illness is the best approach, but sometimes it's difficult getting started. If you are planning for yourself, you could tell family members that you are updating a will and would like the opportunity to discuss your wishes with them. If you are a family member, take any opportunity that might come up such as an illness of a friend or relative or the subject of a television show, to initiate a discussion. You can explain to them that having this conversation will help you and other family members provide the type of care that they want. Most people find that once the topic is addressed in a caring, compassionate way, everyone is relieved.
Steps to help you begin Advance Planning include:
- Communicate your preferences for health care, living arrangements, and burial to your loved ones.
- Discuss questions or concerns with your doctor, spiritual advisor, trusted friends and family members
- Use the resources listed below to help formulate a plan
- Prepare an Advance Directive and name a Healthcare Agent who can make decisions for you. The Health Library and Resource Center can assist you with Advance Directives.
- Address financial and legal issues: wills, trusts, paying for long term care, insurance policies
If you prefer to have a professional serve as your designated agent or trustee, you may set up this arrangement with the assistance of an Elder Law attorney or professional fiduciary manager. Eldercare Consultants can assist you with referrals for attorneys and fiduciary services.
To receive hospice, physicians must be willing to state that death can be expected within 6 months if the disease follows its normal course. This does not mean that care will only be provided for 6 months; hospice can be provided as long as the person's physician and hospice team certifies that their condition remains life limiting.
Although most patients receive hospice care at home, hospice care can also be provided in the hospital, long term care settings such as nursing homes, and independent hospice facilities. Hospice services include pain management, spiritual services, 24-hour on-call care, respite care, and bereavement support. Most health insurance plans cover some Hospice services. For the Medicare Hospice benefit, see Resources listed below.
In a partnership of caring, Pathways Hospice was created in 1986 as a joint venture with El Camino Hospital and Sequoia Hospital, to help families successfully care for their loved ones at home. This community-based, not-for-profit organization can help with intermittent nursing care, rehabilitation therapy, hospice, private pay home care aides, and safety tips advice.
El Camino Hospital's Grief Support Spiritual Care Services provides support to patients, their families and caregivers. These services support a healing environment within the hospital and seek to strengthen ties to local religious communities. They also offer a helpful booklet "When someone you love is dying: Preparing for death, coping with grief." This booklet is a resource to help families understand the physical and emotional changes of a person nearing death and the grief process. It also provides a checklist of things to do following the death of a loved one, a list of local mortuaries, and a listing of grief support services and resources.
End of Life Caregiving (download)
Medicare Hospice Benefit (download)