7.

Does a person have the right to die at home?

Yes. The law permits individuals to refuse any type of medical care, even if that decision would result in physical harm or death. Individuals also can refuse to stay in hospitals and choose to return home even against medical advice. For some who are too sick to benefit from continued medical treatment at a hospital, the decision to die in the more familiar and comfortable surroundings of home is considered reasonable, and may even be suggested by the doctor. In fact, although most people today still die in health care facilities, an increasing number are choosing to die at home when their deaths are expected because of a critical illness or an advanced condition.

Are there advantages to dying at home?

Yes, there are several advantages. First, dying persons often can be made more psychologically comfortable in a familiar environment, surrounded by caring family members and friends. They can remain involved in the lives of their family and friends. In addition, the home setting offers a better environment for working on personal projects, like writing, and may permit individuals to continue enjoying hobbies and other leisure activities. As some dying persons and their families have noted, people who return home to die can still experience "living while dying."

Second, dying persons often retain a greater sense of control over their lives when they distance themselves from hospitals and other health care facilities. People at home live by their own schedules, not schedules determined by hospital policy. For example, patients in hospitals receive their meals according to hospital schedules; individuals at home can eat when they feel hungry. This sense of control can be an important factor in the emotional well-being of dying persons during their last weeks or days.

Finally, the home may be the ideal setting for dying persons to say their final goodbyes to family and friends.

Are there disadvantages to dying at home?

Yes, there might be. The emotional stress of caring for a dying person might be too much to handle for some family members. Also, it may be frightening for both dying persons and their families to be without the direct medical supervision that would be available if they remained in the hospital.

Do dying persons who refuse life-prolonging treatments (life support) and choose to die at home risk losing their right to other medical care?

No. Doctors cannot interpret the decision to refuse life-prolonging treatments as a refusal of all medical care. In fact, dying persons will continue to need medical care throughout the dying process to alleviate pain and to provide comfort.

However, there are some practical considerations. When people return home to die, they or their families usually will need to find new doctors because the attending physicians at the hospital often are not available once patients are discharged. Although the ideal situation would be to find doctors willing to make house calls and stay involved in their patients' care throughout the dying process, this may be difficult.

Medical Considerations

Is it necessary to be under a doctor's care while dying at home?

Yes. The doctor's role remains essential. A doctor can act as a coordinator of the services a person needs when returning home to die, including finding a hospice program or home health care agency. Also, as the dying person's condition and needs change, a doctor is necessary to change treatment orders. All medications, especially those for pain control, must be prescribed by a doctor. In addition, to be reimbursed by insurance, a doctor must write orders for medical treatments, skilled nursing care and hospice care.

What is hospice?

Hospice is a philosophy of care giving based on an acceptance of death. The goal of hospice is not to prolong life, but to provide medical treatments that alleviate pain or maintain comfort throughout the dying process and to offer other support to dying persons and their families. The medical care provided by hospice is often called "palliative" or "comfort" care. Although some hospitals and nursing homes have wings devoted to hospice care, most people receive hospice care in their own homes.

(To find a hospice program near you, contact the National Hospice Organization at 1-800-658-8898 or HospiceLink at 1-800-331-1620.)

When is hospice a suitable option?

Hospice is an option for people who have been diagnosed by a doctor as terminally ill and who are expected to die within a short time, usually six months. A terminal illness may include cancer, AIDS, end-stage Alzheimer's disease and permanent unconsciousness, among others. Dying persons who do not qualify for hospice can still arrange to receive palliative care at home from their doctors, hospice programs and home health care agencies.

How is home health care different from hospice?

Home health care and hospice share the same basic function of providing health care in the individual's home. They may differ in their goals for providing that care. The purpose of hospice care is to treat dying persons only. In contrast, the purpose of home health care is to care for all individuals needing medical assistance at home, and can include providing palliative care for dying individuals, life-prolonging treatments for persons while they recuperate from surgery, and various ongoing therapies for people suffering from chronic disabilities. Hospice caregivers can be viewed as specialists in dealing with dying persons. Home health care workers are generalists who provide a wide variety of health care services.

Another difference is that all hospice programs must provide care to families as well as to the dying persons, including counseling, pastoral services and support groups. Home health care services are not required to provide care to the families, although many may do so.

When is professional assistance necessary?

The need for professional assistance depends on the needs of both the dying person and his or her family. In many instances, hospice or home health care is necessary for the administration of medications or other health care procedures, as well as assistance in bathing and other personal care. In other instances, family members can be trained to provide most of the care a person needs while dying at home.

The family's needs also may determine the need for professional assistance. Practical considerations, such as the need to work or to run errands, may necessitate professional assistance. The need to simply "take a break" from the emotionally draining responsibility of caring for a dying person also is a consideration.

Moreover, individuals choosing to die at home may require 24-hour care. Often, this is too much for family members to handle alone, and might require professional assistance.

Can pain be adequately treated at home?

Yes. Individuals can usually be made as comfortable and pain-free in their homes as in hospitals. Even though the management of a dying person's pain can be a complicated process and may require professional assistance, family members often are instructed about pain control procedures and become the primary providers of that care.

At times, however, an individual's pain can be better managed in a hospital. He or she should then be admitted to the hospital for proper care. The dying person's doctor or the hospice program can order the admission to the hospital.

Legal Considerations

Is the cost of hospice or home health care covered by health insurance?

Yes, in many circumstances. Medicare in all states, and Medicaid in most, cover the cost of hospice. However, individual health insurance policies should be examined to determine how much of the cost of hospice will be reimbursed, and how long the care will be covered. Home health care also might be covered by health insurance, including Medicare and Medicaid, but it is necessary to determine the coverage on an individual basis. A doctor's order indicating the necessity of hospice or home health care is required for reimbursement.

Does a hospital have responsibilities toward a person who has decided to die at home?

Yes. All hospitals have a duty to ensure that their patients are released into an environment that provides appropriate care. Members of the hospital staff, usually called discharge planners, are required to arrange for all the care people need and are entitled to when they leave the hospital. In most hospitals, a social worker is designated to act as the discharge planner. By completing a review of patient and family needs, the discharge planner can link the patient and family with resources in their community. Such services may include making arrangements on behalf of patients or families for admission into a nursing home or another type of health care facility. For dying persons, discharge planners should ensure that health care aimed at providing comfort and relieving pain is available through either a hospice program or a home health care service.

Can family members insist on a discharge when a dying person is no longer capable of making decisions?

Yes, providing that:

• a family member has been appointed as the health care agent by the dying person in a medical power of attorney or health care proxy form,

• state law permits family members to make health care decisions for incompetent loved ones in a surrogate decision making statute, or

• family members can produce evidence that the dying person would want to refuse life-prolonging treatments.

The best evidence the family can provide is any written indication of the dying person's wish to die at home, such as a living will, entries in a diary and or letters to relatives or friends. If necessary, the family also should provide signed and notarized statements (affidavits) written by relatives and friends, describing past conversations with the dying person that indicate a preference to refuse life-prolonging medical care.

(If you encounter a situation in which a health care facility refuses to honor a person's wishes concerning life-prolonging treatment, please call Choice In Dying's counseling service at (1 -800-989-WILL.)

Do families face legal risk when they allow loved ones to die in their homes?

No, as long as the family can clearly demonstrate that it was the dying person's wish to refuse life-prolonging treatment and return home to die. To satisfy the authorities, the dying person and his or her family should prepare documentation that indicates the person's wish to die at home.

A dying person who is mentally competent should clearly document in writing, his or her desire to die at home. If the dying person is not competent, the family needs to gather evidence to show that the person would have chosen to die at home.

If these steps are not taken, state authorities, such as Adult Protective Services, may seek a court order to remove elderly persons from their families if case workers believe these senior citizens are being neglected or experiencing physical or emotional abuse. If the dying person is a minor, the family may face similar intervention by Child Protective Services.

Can a person dying at home change his or her mind and ask for life-prolonging treatment?

Yes. An individual can always ask for life-prolonging procedures. For example, a terminally ill person may decide to try a new drug or procedure that becomes available after a decision has been made to die at home. However, hospice patients may encounter problems with reimbursement from health insurance if they request life-prolonging procedures after opting for hospice care. Usually, hospice patients receive 100% coverage of health care costs with the agreement that they will give up their right to reimbursement for life-prolonging procedures. It is possible that treatments (other than palliative care) requested by hospice patients might not be covered by health insurance. Health insurance policies should be checked carefully to determine coverage for these situations.

Is a person's decision to refuse life-prolonging treatment and return home to die ever considered suicide?

No. The individual's death is due to the underlying medical condition and therefore is not considered a suicide under the law.

If family members are asked by a dying person to assist in a suicide attempt, are they at legal risk?

Yes. Family members who assist in a dying person's suicide or suicide attempt are putting themselves at legal risk. The laws in nearly all states consider assisted suicide a criminal act. Depending on the state, "assisting" can include not only being involved in the physical act, but also providing the physical means used by another person to commit or attempt suicide, such as putting a bottle of pills and a glass of water within reach.

When the Dying Person Is in the Hospital

What should a family do to prepare for a dying person's Discharge?

Many issues must be resolved before a patient can be discharged from the hospital and transferred home. Family members should begin by determining whether the dying person's health insurance will cover all the care he or she will need at home. The family then can arrange for professional assistance through either a hospice program or a home health care service, and also buy or lease any necessary medical equipment.

In addition, family members need to work with the doctor to create an appropriate care plan to ensure that all the health care needs of the dying person have been considered. The doctor should also prepare a "To whom it may concern" letter discussing the patient's condition and the decision to die at home. The letter should clearly indicate that the individual's death is expected. A copy of the letter should be kept at home and all caregivers should know where it is.

What is a "care plan?"

A care plan is used to carefully document the health care needs of dying persons when they return home. The plan should include a schedule of when medications are to be given, establish shifts for caregivers and indicate under what circumstances professional assistance is required. It should also include information on who to call in a medical emergency and after death, and the name and telephone number of another doctor in case the attending physician cannot be reached.

When The Dying Person Is At Home

How can the family prepare for their loved one's death while he or she is still alive?

The best way to avoid complications at the moment of death is to select, before the death, a funeral home that will conduct services for the loved one. The funeral director should be informed that the person intends to die at home and arrangements should be made so that the family can contact the funeral home after the death to schedule a time to transport the body. It is important that the doctor be involved so the funeral director can be assured that the necessary death certificate will be available without difficulty.

Are advance directives honored at home?

Yes. Once advance directives—such as living wills and durable powers of attorney for health care—become effective, they must be honored by health care providers, whether the patient is in a hospital, nursing home or at home. Advance directives are very important because they provide a written record of the person's medical treatment wishes.

However, advance directives will not be honored in an emergency. If 911 is called, ambulance crews are generally required by law to perform cardiopulmonary resuscitation (CPR) and other forms of aggressive treatment, unless a nonhospital do-not-resuscitate (DNR) order is in place.

What is a nonhospital DNR order?

A nonhospital DNR order is a document signed by a doctor directing paramedics not to perform CPR on a critically ill person. The order can be considered a form of advance directive, but it is different from a living will or medical power of attorney in two very important ways. First, a nonhospital DNR order is not meant for everyone because most healthy people would want to receive emergency care. Second, a nonhospital DNR cannot be filled out by individuals for themselves; instead, it must be issued by a doctor.

Because some states still have not passed laws permitting nonhospital DNR orders, this option may not be available to all people choosing to die at home.

Is it ever appropriate to call 911 when a person has chosen to die at home?

Usually, no. If a medical problem arises at home, it is usually best to contact the person's doctor or hospice program rather than calling 911 . The doctor or hospice nurse can decide whether the condition can be managed at home or requires hospitalization.

Can unwanted hospitalization be prevented?

Yes. To prevent unwanted hospitalization, a dying person should take the following steps: 1) fill out advance directive forms; 2) make an explicit written statement, signed before two witnesses, that indicates he or she does not want to be hospitalized and the reason for the decision; 3) ask the doctor to issue a nonhospital DNR order; 4) make sure that each caregiver, both family members and hired professionals, knows the dying person's wish regarding rehospitalization and agrees not to call 911.

Do reasons exist for hospitalizing persons who have returned home to die?

Yes. A dying person might want to undergo a procedure to alleviate a problem unrelated to the terminal condition. Also, he or she might be hospitalized to give family members respite from the daily burden of caring for a dying person. Family members can become physically and emotionally drained by the experience, and a break of a few days can re-energize them for several weeks. In fact, many hospice programs include reimbursement for a few days of rehospitalization per month to provide respite for caregivers.

Can medical treatment be stopped at home without the doctor's knowledge?

No. If an individual's care plan includes the administration of various medical procedures or medications, these treatments cannot be withheld by a caregiver without the doctor's explicit authorization. For example, if an incapacitated person is discharged from the hospital with a care plan that includes artificial nutrition and hydration (tube feeding), the family cannot simply remove the feeding tube after the loved one is brought home, even if they believe this would be the dying person's wish or in his or her best interest. If such action becomes public, it would likely result in intervention by Adult Protective Services and is generally considered to be abuse. If the family believes that a treatment provided at home has demonstrated no benefit to their loved one, they should discuss the matter with the doctor and ask that an order be issued to discontinue the treatment.

Is the family at legal risk for providing too much pain medication?

No. As long as the pain medication is being given in prescribed doses with the intent to relieve pain and under the supervision of a doctor, no risk of liability exists. However, family members should discuss any changes in dosage with the doctor before making adjustments.

How else can the family support a loved one throughout the dying process?

Families can contribute significantly to the emotional health of dying loved ones. Dying persons often have reported that conversations and activities with family members involving topics other than their own health are the most gratifying. It is important to make dying loved ones feel that they are still a part of their families' lives. The presence of children can be especially comforting. The physical touch of family members and close friends can be reassuring.

Factors such as the physical location of the dying person's bed, can be important as well. Keeping the bed near family activities instead of secluded in a separate bedroom can increase social interaction, and therefore enhance the dying person's emotional well-being.

What support is available for the family?

Many families of dying persons rely on their friends and neighbors for support, as they would under other circumstances. Friends and neighbors can help with basic chores such as running errands, cooking and cleaning, and their presence often provides diversion from the daily routine of caring for a dying person. This connection to the outside world is essential to maintain balance in the lives of family members who may otherwise become too wrapped up in caring for their dying loved one.

Family members also can turn to more formal groups for support. The family's church may provide emotional relief, as may support groups organized for relatives of individuals suffering from a particular disease or condition.

Some caregivers may want to seek professional counseling to deal with both the impact of caring for the dying person, and to prepare for the loved one's eventual death.

How will the family know when their loved one is near death?

Often it is not possible to know when death is imminent. Although it is difficult to make accurate predictions of the time remaining to dying persons, family members can learn to recognize the signs of impending death for the particular disease or condition that afflicts their loved one. The doctor, nurse or hospice program, as well as organizations that deal with the particular disease or condition, may be able to provide this information.

After Death

How can the family be sure their loved one is dead?

The family should prepare by asking the doctor while the dying person is alive how they can accurately determine if he or she has died.

Who should the family call after death?

The family should first notify the person's doctor of the death, and then call the funeral director with whom they have already made arrangements for the removal of the body. If the dying person was enrolled in a hospice program, the family should call the hospice to get instructions. Calls to hospitals and 911 should be avoided.

What if someone calls 911 after the person's death?

It is possible that someone will call 911 after the death is discovered, perhaps because a family member panics or a hired caregiver is not aware of the person's intent to die at home. If this happens, the individual's doctor should be contacted immediately so that he or she can direct the actions of the ambulance crew that responds. If the doctor cannot be reached, prepare evidence to present to the ambulance crew which indicates that death was expected and that the person's intent was to die at home. This evidence should include any or all of the following: the dying person's advance directives, especially if they indicate a specific wish to die at home; the doctor's letter indicating the person's condition and intent to die at home; and a nonhospital DNR order.

How long should the family wait before calling the doctor and funeral director?

Some practical considerations may dictate when to call the doctor and funeral director. For example, if the person dies in the middle of the night, it might be necessary to wait until the next morning to reach the doctor or funeral director.

Some families also postpone calling to give relatives and close friends the opportunity to gather and grieve privately before the death becomes public.

Who can sign the death certificate?

A death certificate must be signed by either a doctor, a coroner or, in some states, a nurse. In the case of individuals whose deaths were expected, a coroner's involvement is unnecessary, and the doctor or nurse who had been treating the person before death should sign the death certificate.

(Check with a local funeral home for more information on the legal requirements for obtaining death certificates in your state.)

Must the police get involved?

No. There is no reason to call the police. However, if an ambulance arrives and its crew discovers a dead body that cannot be resuscitated they may be required by law to call the police to make sure that the death was natural and did not involve any criminal activity.

Is an autopsy necessary?

No. An autopsy is not necessary when a person dies at home unless the police are involved and determine that a definitive cause of death is necessary. Again, for patients whose deaths are expected, the formality of an autopsy usually is not necessary.