ACS :: Making End of Life Decisions

Helen, age 72, with advanced cancer: "I'm going to tell my husband that I don't want anyone pounding on my chest or putting tubes down my throat if I stop breathing. I just want to go naturally. I'm going to tell my children too."

It is usually not the act of dying, but the quality of dying that is the biggest concern at the end of life. Most people who come to accept dying as a natural and normal part of life do not want to prolong the process when it won't really change the outcome. But thinking about a good death is not something most people do. Some patients want to stay at home. Others choose to go to an assisted living center, a nursing home, or an inpatient hospice program. Again, you should make the choices that you feel are best for you, your family, and your situation.

The goal of any cancer care is to give you the best possible quality of life. This is a very personal issue. There are ways you can be sure that your family and your cancer care team know what is important to you and what you want to be able to continue to do.

At this point think not only about how you are going to live the next few months, but also think about and prepare for how you're going to die.

You need to know that it may not be enough to just tell your family what your wishes are for your medical care. You can choose the kind of treatment you get and refuse any treatment that you do not want. If you have not already made a decision about your health care at the end of your life, now is the time to do so.

An advance directive puts your decisions about future health care in writing. You can also use it to name a surrogate (a substitute, also called a proxy or agent) to act on your behalf when you cannot act for yourself. Advance directives are legal documents that clearly state your wishes about medical decisions and may even give specific details about how you would like to die. Your doctors will follow your advance directive if you become unable to express your desires as your illness progresses. Having an advanced directive takes the burden of making these decisions off your family members and health care team. It also helps to assure you that you will get what you want up until the very end of your life.

Advance directives can only be used for decisions about medical care. Other people cannot use them to control your property or money. Advance directives take effect only when you are unable to make your own decisions. Make copies of your advance directives and give copies to any of your health caregivers. Talk to your family about your wishes so they clearly understand what you want. Be sure your closest family members know where to find a copy of your advance directive.

You can get more information in our document, Advance Directives. It can be ordered from our toll-free number or found on our Web site. Here is a brief description of the most common types of advance directives:

A durable power of attorney for health care (or DPOA) can also be called a medical power of attorney, a health care proxy, or an appointment of a health care agent. A DPOA for health care is a written legal document in which you name someone who will make medical decisions for you if you become too ill to make decisions for yourself. This person will talk to the doctors and health care team on your behalf and make decisions according to your directions if you become unable to do so. In a DPOA for health care, you can note the specific kinds of treatment or procedures you do or do not want. If your wishes are not known, the person you appoint will make those decisions for you based on what they think you would want. So, you will want to let that person know what you have in mind, and what you do and don't want.

The other main type of advance directive is a living will. This document also gives you the power to make sure your wishes are followed if you become too ill to make decisions for yourself. The living will gives directions about the use of certain medical treatments at the very end of life. For example, you may state that you do not want a feeding tube or intravenous (IV) fluids at the end of your life. You may also decide you do not wish to receive CPR (cardiopulmonary resuscitation) if your heart stops or to be put on a breathing machine (called a ventilator) if you stop breathing on your own. This is something you should discuss with your family and health care team ahead of time, but it is even better to have it all in writing as well. Having these issues clearly resolved to your satisfaction will give you and your family peace of mind.

Some states have a special advance directive that is called a Do Not Attempt Resuscitation (DNAR) or Do Not Resuscitate (DNR) order for use outside the hospital. The non-hospital DNR is intended for emergency medical service (EMS) teams, who answer 911 calls and in most cases must give you every possible life-sustaining service. Even though families expecting a death are advised to call other sources for help when the patient gets worse, a moment of uncertainty sometimes results in a 911 call and unwanted measures that prolong death. The non-hospital DNR or DNAR order offers a way for patients to refuse the full resuscitation effort even if the EMS is called. It must be signed by both the patient and the doctor.

If you are in the hospital, you can ask your doctor to add a DNR or DNAR order to your medical record. But an in-patient DNR order is only good while you are in the hospital.

Some people are interested in donating organs. Even though you have cancer, you still may have some options of donating either your corneas (from your eyes) or your entire body for medical research. If you would like your body to benefit someone or some cause after your death ask your doctor about these options.

Organ and tissue donation instructions can be included in your advance directive document. Many states also have organ donor cards or add notations to your driver's license.

Although this is not a legal document, it can be very helpful. This document can be a guide for your family to help them make decisions at the end of your life and after you are gone.

In the instructions, you can name who you want to take in and look after your children or pets. This is useful if the guardian you have named in your will lives out of state. You may also list names and telephone numbers of those who should be contacted right after your death. This could include relatives, your lawyer, financial advisor, the human resources manager at your former job, your insurance agent, or whomever else you consider important in your life.

You should list the location of important papers and bank and investment accounts. Note also the person who should contact these organizations. You can also leave instructions about the kind of funeral or memorial service you would like.

Copies of instructions should be given to the executor of your will, trusted family members, or other loved ones. Be sure to talk with the people who will need to carry out these instructions. Be sure they are willing to do so and see if they have any questions about your wishes.

All of these documents should be kept in a safe place in your home. You can store an original in a safe deposit box if you want, but copies should be given to a close family member, a member of your health care team, and your lawyer. It is important to make sure someone knows where these documents are and can get to them quickly. It's also important to tell your health care team what they say when and if the need arises.

If you left work because of your health, you are entitled to keep your health insurance for the next 18 months. But you must elect to do so within 63 days of when you stopped working. You can do this under the federal law called COBRA (the Consolidated Omnibus Budge Reconciliation Act). Your employer usually requires you to pay the premium for your insurance plus 2% to cover costs. Your employer may help with the costs of your insurance premiums, but is not required to do so. COBRA applies to nearly all businesses that employ 20 or more workers. If you are disabled you can continue your coverage for 29 months. The Social Security Administration decides whether you are considered disabled. For more information please see our document What is COBRA?

If you do not have a COBRA option and need to look into individual coverage, you may find that you are declined coverage by a number of insurance companies and HMOs. If you can find an insurer, the cost of these policies or medical plans will be high. If you are turned down as "uninsurable" and you are without medical coverage, check with your state's insurance commission. Many states offer medical coverage called high-risk pools for those who have been turned down by insurance companies and HMOs. A state-supported plan may cost more than some other plans.

When joining a new medical plan, you may face a "pre-existing condition exclusion period." A pre-existing condition is a health problem that you had before you joined your medical plan, such as your cancer. When this happens, your plan will make you wait before they pay the costs of that medical problem. Find out if this is the case before joining. The wait is often around a year and it may be too long for the insurance to benefit you.

There are some newer rules that can help you get health insurance coverage through an employer, if you have recently been insured through an employer's group. If you have met the following requirements, then a pre-existing condition exclusion period may not apply to you:

But if you are buying a plan that is not group coverage (including high-risk pools), the pre-existing condition exclusion period is set by the state and can be many years or even unlimited. If you are getting a plan through someone other than an employer, the insurance provider can also impose an "elimination rider" that would keep your cancer treatment from ever being covered by that policy. Remember that even an expensive insurance plan with a high deductible is better than one that won't cover the care you need now. If you are having trouble with this, it may help to talk to an insurance agent.

If you are on Medicare now, you may be able to add more coverage with a Medigap policy or a Medicare HMO. If you get an add-on policy within 6 months of going on Medicare, you won't have to wait out a pre-existing condition exclusion period. If you get an add-on policy after 6 months of being on Medicare you likely will have to wait before the plan would help pay your medical bills. Find out how long the wait is -- it may be too long to help you.

There are still a few government programs that may help if you don't have coverage. But to qualify for many of these programs, your income and assets must be very low.

Are you currently collecting Social Security Disability Insurance (SSDI) income? Keep track of the number of months you've been on SSDI. After you have been covered for 24 months, you will be eligible for Medicare. Many health care providers and hospices accept Medicare. This will give you some choices in your health care. You can get more information on Medicare by calling 1-800-MEDICARE (1-800-633-4227), from your nearest Social Security Administration office (check your local phone book), or by talking with your cancer care team social worker.

Medicaid is another government program that covers the cost of medical care. Not all health providers take Medicaid. To get Medicaid, your income and assets must be below a certain level. These levels vary from state to state. Some people try to qualify for Medicaid by giving away their assets, or selling them for less than they are worth. But anything you give away (or sell for less than its market value) up to 5 years before applying for Medicaid is still counted toward your income. So, giving away assets could delay qualifying for this program. Also, it is a federal crime to help someone get rid of assets in order to qualify for Medicaid. You can talk with your social worker or contact your state Medicaid office about what is required to qualify.

One benefit that may be available to you is long-term disability. You must look at your employer's description of disability and see if you meet the criteria. A human resources expert at your work- place can discuss this with you or your partner and advise you about the best way to qualify for benefits. If your employer pays for your plan, your disability may not be quite as much as the usual 60% to 70% of your wages. Payments are also lower when you also are getting disability income from Social Security or another program.

Some people buy their own disability insurance plans. For these people, the rules are different. Once you have met the plan's definition of disability, you will be paid a specific amount per month from the company.

If you've been working for many years, money has probably been taken out of your paycheck for Social Security. If you're self-employed, the self-employment tax you pay covers your Social Security contribution. In this case, you may qualify for disability benefits. But you must meet Social Security's definition of disability, which is quite strict. If you are turned down, it is best to appeal the decision. Many cases that are turned down at first are approved after an appeal.

Don't count on Social Security Disability Insurance (SSDI) for your immediate needs. Even if your claim is approved, you will not get benefits until the sixth full month of disability. The approval process takes a long time and it may be too long in your case.

To find out how much you could get from SSDI you must fill out Social Security Form 7004. Call the Social Security Administration at 1-800-772-1213 to order this form or print it from socialsecurity.gov.

If you did not work much or your income was very low before you became unable to work, you may be eligible for Supplemental Security Income (SSI). To get SSI, your income and assets must fall below a certain level. These levels and the amount you could get from SSI vary from state to state. And the amount usually changes a little each year.

If you have life insurance through your job and leave your job, take your life insurance policy with you. You may be able convert it to an individual permanent policy with no proof of insurability, but you usually must do it within a month of leaving the job. You will have to pay the premiums out of pocket, but some employers have a policy with a feature called a "waiver of premium rider." This means that you keep your group life insurance policy but you do not have to pay the premiums if you are totally disabled. They are paid by the insurance company instead.

If you have your own individual life insurance policy, keep it active by paying the premiums on time. Find out if the policy has a waiver of premium rider. This waiver means the policy's premium is paid by the insurance company if you become totally disabled. This could save you money and keep your policy in effect.

You may also want to double check the beneficiary you have named on your life insurance policy. Be sure the money is going to the person or people you want to get it.

Your family and friends are considered informal home caregivers. Formal home care is a business that provides care to all types of patients with a wide variety of needs. Home care can provide anything from skilled nursing care to housekeeping services. The focus of home care is on improving health and quality of life. Skilled home care services from a certified agency can do a lot to help with symptom management and instruction about medicines, central lines, and wound care, to name just a few available services.

A doctor's prescription (sometimes called an order) is needed for all home care services. In most states you must meet strict criteria for home care. This can include homebound status (the patient only leaves the home to get medical treatments), a need for skilled services, the care is needed part-time only, and the services provided are reasonable and necessary. These Medicare-mandated guidelines can make it hard for end-of-life care to be managed through a home care agency.

Hospice care puts you and your loved ones in the care of experts on the end of life. The goal of hospice care is to help patients to live their last days as alert and pain-free as possible. Hospice care aims to manage symptoms so that a person's last days may be spent with dignity and quality, surrounded by their loved ones. Hospice affirms life and neither hastens nor postpones death. Hospice care treats the person rather than the disease; it focuses on quality rather than quantity of life. It provides family-centered care, involving the patient and family in all decisions.

This care is planned to cover 24 hours a day and 7 days a week. Hospice care can be given in the patient's home, a hospital, nursing home, or private hospice facility. Most hospice care in the United States is given in the home, with family members or friends serving as the main caregivers. If a patient wants home hospice care, a caregiver must be in the home with them 24 hours a day.

Hospice care is used when you can no longer be helped by curative treatment, and you are expected to live about 6 months or less. You, your family, and your doctor decide together when hospice services should begin. If you get better or the disease goes into remission, you can be discharged from the hospice program and return to active cancer treatment, if desired. Hospice care may be resumed at a later time if needed.

Making the choice to get hospice care should not be viewed as a last resort. The benefits that you and your family can get from hospice care are very valuable. Through hospice care you will get the help you may need to put your affairs in order, say your good-byes, and spiritually prepare for your death in a way that promotes dignity and comfort. Your family will be fully supported through the dying process and helped through grief and bereavement after your death.

Even though it is common to hear that you must expect to have 6 months or less to live, many other criteria are used to decide if a person with cancer is eligible for hospice. In most cases, you must have widespread, aggressive, or progressive disease as seen by increasing symptoms, worsening lab values, and/or evidence of metastasis (the spread of cancer cells to distant areas of the body). You must also be unable to work or do certain things for yourself. Finally, you must have either refused life-prolonging therapy or have been getting worse in spite of treatment. You, your family, and your doctor decide together when hospice care should begin.

There are things about hospice care that make it different from other health care. Hospice care focuses on palliative care. Palliative care is treatment to relieve physical and psychological symptoms. It focuses on comfort and increases well-being. Hospice staff members are specially trained to help you and your loved ones through this very difficult time. The knowledge and experience they can share with you can help you to have the very best quality of life right up until the very end.

A team of professionals: Hospice care uses a health care team of doctors, nurses, social workers, counselors, home health aides, clergy, therapists, and trained volunteers to care for you and your family. Each team member offers support based on their special areas of expertise. Together, they give you complete palliative care (treatment that relieves symptoms, but is not expected to cure the disease). Their goal is to improve your quality of life by relieving symptoms and giving social, emotional, and spiritual support to you and your loved ones.

Pain and symptom control: The goal of pain and symptom control is to help you to be comfortable while allowing you to stay in control of and enjoy your life. This means that side effects are managed to make sure that you are as free of pain and symptoms as possible, but still alert enough to enjoy the people around you and make important decisions.

Spiritual care: Hospice care also tends to the spiritual needs you and your family may have. Since people differ in their spiritual needs and religious beliefs, spiritual care is set up to meet your specific needs. It may include helping you to look at what death means to you, helping you say good-bye, or helping with a certain religious ceremony or ritual.

Home care and inpatient care: Although hospice care can be centered in the home, you may need to be admitted to a hospital, extended-care facility, or an inpatient hospice facility. The hospice can arrange for inpatient care and will stay involved in your care and with your family. You can go back to in-home care when you and your family are ready.

Respite care: While you are in hospice, your family and caregivers may need some time away. Hospice care may offer them a break through respite care, which is often given in up to 5-day periods. During this time you will be cared for either in a hospice facility or in beds that are set aside for this in nursing homes or hospitals. Families can plan a mini-vacation, go to special events, or simply get much-needed rest at home while you are cared for in an inpatient setting.

Family conferences: Through regularly scheduled family conferences, often led by the hospice nurse or social worker, family members can stay informed about your condition and what to expect. Family conferences also give you all a chance to share feelings, talk about expectations, and learn about death and the process of dying. Family members often find great support and stress relief through family conferences. Conferences may also be done informally on a daily basis as the nurse or nursing assistant talks with you and your caregivers during their routine visits.

Bereavement care: Bereavement is the time of mourning after a loss. The hospice care team works with surviving loved ones to help them through the grieving process. A trained volunteer, clergy member, or professional counselor provides support to survivors through visits, phone calls, and/or letter contact, as well as through support groups. The hospice team can refer family members and care-giving friends to other medical or professional care if needed. Bereavement services are often provided for about a year after the patient's death.

Volunteers: Hospice volunteers play an important role in planning and giving hospice care in the United States. Volunteers may be health professionals or lay people who provide services that range from hands-on care to working in the hospice office or fundraising.

Staff support: Hospice care staff members are kind and caring. They communicate well, are good listeners, and are interested in working with families who are coping with a life-threatening illness. They are usually specially trained in the unique issues surrounding death and dying. Yet because the work can be emotionally draining, it is very important that support is available to help the staff with their own grief and stress. Ongoing education about the dying process is also an important part of staff support.

Coordination of care: The hospice team coordinates and supervises all care 7 days a week, 24 hours a day. This team is responsible for making sure that all involved services share information. You and your caregivers are encouraged to contact your hospice team if you are having a problem, any time of the day or night. There is always someone on call to help you with whatever may arise. Hospice care assures you and your family that you are not alone and help can be reached at any time.

Finding the hospice program that meets your needs may take some research, but it will be time well spent. It is important that you and your family do this while you have the strength and ability to do so. Quality of care, availability of needed services, the types of services covered, staff training and expertise, and insurance coverage all need to be considered. Most communities have a more than one hospice provider you can choose from. Ask around about others' experiences with hospices. Other resources are listed at the end of this document but here are some other ways to start your search:

Local resources: Your doctor or hospital discharge planner can help you find hospices in your area. Hospice care providers also are listed in the phone book. Your community may have information and referral services available through your local American Cancer Society, an Agency on Aging, a local United Way chapter, the Visiting Nurse Association, or your place of worship.

State resources: You may contact your state's hospice organization or its department of health or social services to get a list of licensed agencies. The state health department oversees certification of hospice services. Certification makes them able to get funding from Medicare and, in some states, also from Medicaid. Check the blue pages of your phone book for other state resources in your area.

National resources: National organizations addressing hospice care accreditation, treatment, and patient advocacy are listed in the "Additional resources" section at the end of this document. Some of them can also tell you which hospices are near you.

Home hospice care usually costs less than care in hospitals, nursing homes, or other institutional settings. This is because less high-cost technology is used and family and friends provide most of the care at home.

Medicare, Medicaid, the Department of Veterans Affairs, most private insurance plans, HMOs, and other managed care organizations may pay for hospice care. Along with this, community contributions, memorial donations, and foundation gifts allow many hospices to give free services to patients who can't afford payment. Some programs charge patients according to their ability to pay.

Medicare hospice: To get payment from Medicare, the agency must be approved by Medicare to provide hospice services.

To qualify for the Medicare hospice benefit, a doctor and the hospice medical director must certify that the patient has less than 6 months to live if the disease runs its normal course. The doctor must re-certify the patient at the beginning of each benefit period (2 periods of 90 days each, then an unlimited number of 60-day periods). The patient signs a statement that says he or she understands the nature of the illness and of hospice care, and that he or she wants to be admitted to hospice. By signing the statement, the patient declines Medicare Part A and chooses the Medicare hospice benefit for all care related to his or her cancer. The patient can still receive Medicare benefits for other illnesses. A family member may sign the statement if the patient is unable to do so.

Medicaid coverage: In 1986, laws were passed to allow states to develop coverage for hospice programs. Most states do have a Medicaid hospice benefit, which is patterned after the Medicare hospice benefit.

Private insurance: Most private insurance companies include hospice care as a benefit. Be sure to ask about your insurance coverage, not only for hospice, but also for home care.

Private pay: If insurance coverage is not available or is not enough to cover all costs, the patient and the family can hire hospice providers and pay for services out of pocket. Some hospices are able to provide services without charge if a patient has limited or no financial resources.

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