End of Life - Common Questions and Answers

Common questions asked by individuals who are dying, according to the American Geriatrics Society Foundation for Health in Agingvii and other sources on end of life care:

Q. Where will I have to go why I’m nearing my last days?
A. Dying at home is usually possible. It is important that dying individuals have family, friends and/or other caregivers to care for them. At-home or in-patient hospice care is also available in most communities. And, depending on the person’s medical condition and finances, nursing homes, assisted living facilities and group homes may meet their needs. Doctors, hospital social and county social workers, can help families find the right place. This is why advance care planning is so important – so that the wishes of the dying can be taken into full consideration during their final days, even if they are no longer able to communicate.

Q. How much will I suffer?
A. Individuals who are dying often fear pain. It is important to let them know that pain can almost always be managed well without the use of needles or tubes, and to work with their medical team to make sure that they are “on top” of the situation.

Q. If I cannot eat or drink, how will I be fed?
A. Many people at the end of life do not feel hunger or thirst, so artificial feeding is rarely required. Ice chips can often increase comfort by cooling the mouth and provide hydration.

Q. What is a hospice?
A. Hospice is a compassionate way to care for dying persons who are very near the end of life. Services are almost always available in the home. There are also inpatient hospice locations, in which the dying person and family can spend the last days of life. Hospice services provide emotional support to patients and loved ones, aid considerably in controlling pain and providing necessary health care, and offer support to caregivers.

Q. I am scared to be alone.
A. Most communities offer a variety of programs (churches, hospices, home health care, hospitals, public health, block nursing, etc.) who train volunteers to help as companions and visitors. You can help individuals connect to these services through MinnesotaHelp.info, county public health, human and social service agencies, and a wealth of other resources.

Q. I have no idea how to get the help and equipment I’m going to need.
A. The individual’s health insurance will usually require that a physician authorize equipment and professional care at home. Depending on the insurance coverage, professional care may include visiting nurses, therapists and someone to help with personal needs such as eating and bathing. Many organizations which provide these services also have social workers or other case managers who can help identify available resources and programs. You can help individuals connect to these services through MinnesotaHelp.info, county public health, human and social service agencies, and a wealth of other resources.

Q. How can I make sure that I get the care I want when I can’t speak for myself any longer?
A. The key is to plan as early as possible so individuals can actively participate in planning their care. Advance care planning usually involves making choices about end-of-life care and completing a legal document – in Minnesota, this is called a Health Care Directive. The Directive overviews specific information about a person’s preferences, such as: 1) their wishes for health care (ex. whether they want feeding tubes, respirators, etc.); and 2) naming a health care agent(s); 2) stating instructions or wishes for health care. The Document combines two legal documents that were used prior to August 1998, the Living Will and Durable Power of Attorney for Health Affairs.

It is typically not necessary for individuals to get legal help to complete these options. Forms approved for Minnesota are available from many health care clinics, hospitals, health insurance organizations, and can sometimes be purchased at stationary stores or downloaded from a Web site. A suggested Health Care Directive can be found on the Minnesota Board on Aging Web site, http://www.mnaging.org/seniors/assistance/directive.html, and the Five Wishes Health Care Directive can be found at http://www.agingwithdignity.org/5wishes.html.

At a minimum, persons should discuss their wishes with their physicians and the person(s) named in the durable power of attorney document – these individuals should also be provided with copies of the Health Care Directive document. It is also a good idea to check with the local hospital to see if they will keep a copy on file in case the individual becomes hospitalized.

Q. I’ve talked to my family and physician, and they know what I want. Why do I need to think about this?
A. Planning and documenting a person’s wishes for death is like leaving a legacy of love for survivors. Most often, difficult decisions must be made and carried out by loved ones, usually at a very stressful time. By making important decisions ahead of time (ex. use of last-minute medical treatments, whom to notify upon death, arrangements for the body and a tribute or funeral, settling of liabilities and assets), survivors can concentrate on grieving and remembering. And, by taking time to attend to these areas, the dying person will have peace of mind, knowing that they and taken control of their affairs and that their wishes will be honored if at all possible.

Q. Do I need a legal will?
A. Preparing a will ensures that assets are distributed as the person wishes. If people die without a will, state laws will govern how the estates are administered, even if they have discussed their wishes with loved ones. Sometimes, the court orders that the estate be administered by a total stranger.

The laws about wills are complex, so it is a good idea for individuals to hire an attorney to help guide them. If they do not want legal advice, a handwritten will – one that is signed and dated – might be legally binding.

An individual should make sure that a will written in past years is up-to-date. They should check to make sure that the executor named is still the person they want to carry out their wishes. And, they should make sure that assets are allocated to persons of choice.