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    Questions and Answers: Dying at Home

    • Does a person have the right to die at home?
    • Answer:

      Yes. The law permits individuals to refuse any type of medical care, including hospitalization, even if that decision would result in physical harm or death. Individuals 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 in the hospital, to die in the familiar and comfortable surroundings of home is considered reasonable, and might even be suggested by the doctor. Although most people today still die in healthcare 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?
    • Answer:

      Yes, there are several.

      • Dying people often are psychologically more comfortable in a familiar environment, surrounded by caring family members and friends.
      • The home setting may offer a better environment for maximizing the quality of life that remains and for achieving personal closure.
      • Dying people retain a greater sense of control over their lives at home. They can live by their own schedules rather than those determined by institutional policy. For example, patients in hospitals receive their meals according to hospital schedules, whereas individuals at home can eat when they feel hungry. This sense of control can help the dying person maintain emotional well-being during the last weeks or days of life.
      • The home may be the ideal setting in which dying persons are able to say their final goodbyes to family and friends.

    • Are there disadvantages to dying at home?
    • Answer:

      Yes, there can be. Dying at home may require an able-bodied care giver. If a family member or friend cannot provide this care, homecare services may be needed.

      The emotional stress of caring for a dying person may be overwhelming. Also, it may be frightening for both the dying persons and their families to be without the direct medical supervision available in a hospital, nursing home or inpatient hospice setting. Counseling by involved health professionals often helps to alleviate these problems by letting the family know what to expect and by reassuring them that appropriate assistance will be available if needed.

    • Can physicians refuse to treat a dying person at home?
    • Answer:

      Yes. Not all physicians are willing to care for patients at home. It is important to ask the dying patient's physician if he or she will provide care in the home and, if not, refer the patient to a physician who will.

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

      Yes. The doctor's role remains essential. A doctor can act as coordinator of the services a person needs when returning home to die, including finding a hospice program or home healthcare agency. Also, as the dying person's condition and needs change, a doctor is necessary to change treatment orders. Finally, medications, especially those for pain control, normally must be ordered by a doctor.

    • What is hospice?
    • Answer:

      The focus of hospice relies on the belief that each of us has the right to die pain-free and with dignity, and that our loved ones will receive the necessary support to allow us to do so.

      Hospice care involves a team-oriented approach to expert medical care, pain management, and emotional and spiritual support expressly tailored to the patient's needs and wishes. 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 offer other support to dying persons and their families. The medical care provided by hospice often is called "palliative" or "comfort" care. Although some hospitals and nursing homes have units devoted to hospice care, most people receive hospice care in their own homes.

    • When is hospice a suitable option?
    • Answer:

      Hospice is an option for people who have been diagnosed with a life-limiting illness and are expected to die within a time, usually six months. Approximately 70-75% of hospice patients have advanced cancer. Increasingly, however, patients with other incurable conditions-such as end-stage Alzheimer's disease, advanced AIDS, and emphysema-receive hospice care.

    • How does home healthcare differ from hospice?
    • Answer:

      Home healthcare and hospice provide similar basic nursing in an individual's home. They differ in their goals for providing that care. Hospice treats dying persons only. In contrast, home healthcare is for any patient who needs medical assistance at home. It can include not only palliative care for dying people, but also treatments for those recuperating from surgery or medical illness and ongoing therapies for people with chronic disabilities.

      Certified hospice programs are required to offer support to families as well as to dying persons, including counseling, pastoral services, and bereavement support. Home healthcare agencies are not required to provide care to families, although many do.

    • Can pain or other symptoms be treated adequately at home?
    • Answer:

      Yes, individuals usually can be made comfortable and pain-free in their homes. Pain or other physical symptoms are not an inevitable part of the dying process, but when symptoms are present, family members often can be taught to administer pain medication and other treatments to keep the dying person comfortable.

      At times, however, symptoms can be better managed in a hospital. The person's doctor and hospice team, if appropriate can arrange for admission to the hospital if necessary.

    • What other assistance may be necessary?
    • Answer:

      People who choose to die at home may require constant care. Seriously ill or dying patients often need assistance in activities of daily living, such as preparing meals, eating, dressing, bathing, and using the bathroom. Often, these needs may be too much for family members to handle alone and additional help may be needed.

      Trained home care workers often can provide this type of essential non-medical "custodial" care when family members need to work, run errands, or simply "take a break" from the responsibility of caring for a dying person.

    • Do insurance plans or government programs cover the cost of hospice or home healthcare?
    • Answer:

      Yes, although coverage can vary greatly. Because several ways exist to pay for care at home, it is important to determine the patient's benefits. A person may be eligible for coverage under an existing health insurance plan, a privately purchased long-term care plan, or Medicare/Medicaid government programs. Review the insurance plan or government program carefully to determine the type of care available to the patient and to plan for out-of-pocket expenses.

    • Does a hospital have responsibilities toward a patient who has decided to die at home?
    • Answer:

      Yes. All hospitals have a duty to ensure that their patients are released to an environment that provides appropriate care. Members of the hospital staff; usually called discharge planners, handle this. In most hospitals a social worker functions as the discharge planner by completing a review of patient and family needs and linking those needs with community resources. For dying persons, discharge planners should make efforts to find services that will provide end-of-life care.

    • Can family members make the decision to take a person home to die if the person no longer is capable of making the decision?
    • Answer:

      Yes, unless the family and healthcare providers disagree about continuing life support. If disagreement occurs, the patient's legally appointed healthcare agent can make the decision on behalf of the patient. Moreover, if it can be demonstrated that the patient clearly would not want life-sustaining treatment for example, by providing evidence of the patient's previously expressed wishes, the family or other appropriate surrogates could insist that the patient be discharged home. However, whenever a patient is taken home it is essential that provisions for appropriate care be in place.

    • Can family members avoid legal risk if they allow a loved one to die at home when the loved on no longer is able to communicate?
    • Answer:

      Yes. One way is to document clearly that it was the dying person's wish to die at home. It can be helpful for a person to add a statement of the wish to die at home to a living will or some other expression of wishes. A properly appointed healthcare agent has the legal right to speak for the patient.

      If a dying person who is now unable to communicate did not leave specific directions or appoint an agent, the physician must agree that permitting the patient to die at home is medically appropriate.

      These steps can be important. Someone who believes that the dying person is not receiving proper care could involve state authorities, such as Adult Protective Services, and seek a court order to remove the person from the family. If the dying person is a minor, the family could face similar intervention by Child Protective Services.

    • Is a person's decision to refuse life-sustaining treatment and return home to die considered suicide?
    • Answer:

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

    • Are family members at legal risk if they assist a person in committing or attempting to commit suicide?
    • Answer:

      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 assisting 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 another person uses to commit or attempt suicide.

    • What should a family do to prepare for a dying person's discharge to the home?
    • Answer:

      Many issues must be resolved before a patient can be discharged from the hospital and transferred home. First, it is important to determine how care at home and any necessary medical equipment will be paid for. The family can arrange for professional assistance through either a hospice program or a home healthcare agency. In addition, family members need to work with the doctor to create an appropriate care plan that ensures that the dying person's healthcare needs have been considered. The physician or appropriate on-call medical personnel should be available by phone on a 24-hour basis.

    • What is a "care plan" for a person dying at home?
    • Answer:

      A care plan is used to carefully describe the healthcare needs of the dying person and to establish designated shifts and tasks for caregivers. A care plan should be reevaluated on a regular basis to ensure that it continues to meet the needs of the patient. It also should indicate whom to call in a medical emergency and after death.

    • When should a funeral home be selected?
    • Answer:

      To avoid additional stress at the moment of death, it is advisable to select a funeral home before death. The funeral director should be informed that the person intends to die at home. After death the family contacts the funeral home to schedule a time to transport the body. The funeral director will ensure that the death certificate is signed.

    • Are advance directives honored at home?
    • Answer:

      Yes. Advance directives-living wills and medical powers of attorney - become effective if the patient loses capacity to make decisions. Healthcare providers must honor the documents 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 and/or the designated decision maker.

      However, advance directives will not be honored in an emergency. If 911 is called, ambulance crews (emergency medical service or EMS) generally are required by law to perform cardiopulmonary resuscitation (CPR) if the person has stopped breathing or the heart has stopped beating, unless a non-hospital do-not-resuscitate (DNR) order is in place.

    • What is a non-hospital DNR order?
    • Answer:

      A non-hospital DNR order is written by a physician for a person who wants to refuse CPR outside of a healthcare facility. It directs emergency medical care providers, including emergency medical technicians, paramedics, and emergency department physicians, to withhold CPR. A DNR order must be signed by a physician. The order generally is written on an official form, but depending upon the state, might also be accompanied by a bracelet, necklace, or wallet card. Because some states have not passed laws permitting non-hospital DNR orders, this option may not be available to all who choose to die at home.

    • Is it appropriate to call 911 for a person who has chosen to die at home?
    • Answer:

      Usually not, if a medical problem arises at home, it is better to ask the person's doctor or other healthcare provider how to proceed. As part of the care plan, instructions should be in place for handling emergencies. Discussions with providers about what to expect when the person is near death can help relieve anxiety and decrease the uncertainty that could cause unwanted calls to 911.

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

      Yes. A dying person might want to undergo a procedure to address pain or symptoms that may occur during the course of the terminal illness and can only be treated in an inpatient setting. In addition, if a patient is receiving care under a hospice program, the program might have an inpatient facility to which the patient could be admitted for a few days to allow family caregivers a rest. This is commonly called "respite care".

    • Should medical treatment be stopped at home without the doctor's knowledge?
    • Answer:

      No. Medical procedures or medications that are part of the care plan should not be withheld without the doctor's explicit authorization. To withhold or withdraw treatment without physician authorization could have consequences. For example, if a medication or treatment is stopped due to the mistaken belief that stopping it will permit the patient to die more quickly, the patient may suffer more. If the action became public and was viewed as a form of abuse, Adult Protective Services may intervene. If the family believes that a treatment is not helping their loved one, they should discuss the matter with the physician.

    • Is the family at legal risk for providing high does of pain medication?
    • Answer:

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

    • How can family and friends provide emotional support to a loved one throughout the dying process?
    • Answer:

      There are many ways to provide emotional support, but they should reflect the wishes and needs of the dying person. Being excluded from the lives of others is painful to a dying person; however, people may want to handle this interaction in different ways.

      For instance, conversations and activities with family members can help dying loved ones feel that they are a part of family life. The presence of children may be comforting and the physical touch of loved ones may be reassuring. However, individuals may have different preferences for how much company or conversation they want. Some people enjoy a great deal of touching; others do not. For some, children may be energizing, for others, exhausting.

      For some, locating their bed near family activities can help to increase social interaction and improve their emotional well-being; for others, it might be intrusive. Moreover, their wishes may change as their illness progresses. It is important to always ask the person what they prefer at any particular time.

      Hospice professionals and others with experience in caring for the dying can help enhance communication among the dying person and family members.

    • What support is available for the family?
    • Answer:

      Both formal and informal support systems are available. Formal support may come from organizations such as hospice, homecare, disease-related support groups, or faith communities. Informal support networks include friends and neighbors who often are willing to help if given the opportunity. They can sit with a patient to allow caregivers time to shop or simply to take a break. They can help with basic chores such as running errands, cooking, and cleaning. Their presence can be a change from the daily routine.

      A connection to the outside world is essential to maintain balance in the lives of family members who otherwise might become consumed by their caregiving activities.

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

      In serious illness it is difficult to know just how close someone is to death. Family members should talk with the doctor or nurse about signs and symptoms which indicate that death may be near. Family members should be as prepared as possible for death. If the dying person is receiving good end-of-life care, it is likely that death will occur peacefully. A hospice program will provide guidance about what can be expected.

    • How can a family be sure their loved one is dead?
    • Answer:

      In preparation for death, the family should ask the doctor or home care/hospice nurse how to determine that death has occurred.

    • Who should the family call after their loved one's death?
    • Answer:

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

    • What if someone does call 911?
    • Answer:

      Someone might call 911 after death is discovered. Should this happen, the doctor should be contacted immediately so that he or she can direct the actions of the responding ambulance crew.

      If the doctor cannot be reached, it is useful to have documents that can be presented to the arriving ambulance crew indicating that death was expected and that the person intended to die at home. These could include a letter from the doctor indicating the person's condition and intent to die at home, or a non-hospital DNR order if these are available in your area.

      Except for state-mandated, non-hospital DNR forms, such documentation may still not prevent an issue if 911 is called. Emergency personnel normally are required by law to try to resuscitate and transport a patient to a hospital.

    • Should the police be involved if a person dies at home?
    • Answer:

      No. There is no reason to call the police when death is expected. However, if 911 is called and an ambulance arrives and the crew discovers a dead body, they could be required to notify the police to ensure that death was natural and did not involve any criminal activity.

    • Is an autopsy necessary when a person dies at home?
    • Answer:

      No. An autopsy is not required unless the cause of death is suspicious or critical public health concerns exist.

      However, a physician may request an autopsy for additional medical information. In such cases, the next of kin or guardian must consent. If medical questions remain, an autopsy can provide helpful information to both the physician and the family. An autopsy will not interfere with the deceased having an open casket.

    WebMD Medical Reference from the National Hospice and Palliative Care Organization

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