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End-of-Life Care FAQ

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Differences between DNRs, ADs, and POLSTs: http://www.medpagetoday.com/HospitalBasedMedicine/Hospitalists/53673 

Economist Ranking of Countries re: Quality of Palliative Care

http://www.economistinsights.com/healthcare/analysis/quality-death-index-2015

Advance Care Planning

1) What does advance care planning involve?

  • Deciding what types of treatment you would or would not want for medical care at the end of life
  • Communicating your medical care preferences to your primary care physician, proxy, and loved ones
  • Completing advance directives to put in writing what types of treatments you would or would not want, and who you would like to speak for you, should you be unable to speak for yourself

    2) What are advance directives?

    • A living will that documents specific medical interventions that a person would or would not want to receive
    • Assigns a power of attorney for medical care (healthcare proxy)

    3) What is a medical power of attorney (healthcare proxy)?

    • A medical power of attorney is someone you can appoint as your healthcare agent. He/she becomes authorized to make medical decisions on your behalf when you are unable to make your own decisions
    • Your healthcare proxy should be someone who understands your values and wishes

    4) When does a medical power of attorney go into effect?

    • A medical power of attorney goes into effect only after a person’s physician certifies that he/she is unable to make his/her own decisions

    5) Are advance directives valid in all states?

    • Different states may have different laws regarding advance directives, so one state’s advance directive may not always work in another state.
    • If you spend a significant amount of time in more than one state, you should consider completing an advance directives for each of those states

    Do-Not-Resuscitate (DNR) Orders

    1) What is it?

    • A type of advance directive that states that if you do not want cardiopulmonary resuscitation (CPR) if your heart stops beating or you stop breathing

    2) Can it be reversed?

    • Yes. You can change your mind about a DNR whenever you want.

    Emergencies

    1) What happens in an emergency situation?

    • Advance directives do not take effect in 911 emergency situations, as emergency medical technicians (EMTs) are not trained to read these legal documents, and also often do not have time to do so. However, state-recognized DNR orders are followed by EMTs. Unless EMTs are presented with a valid DNR order, they are required to use every life-support measure possible to stabilize the patient

    Palliative care

    1) Who can receive palliative care?

    • Anyone with a serious illness, regardless of life expectancy

    2) What is palliative care?

    • Treatment to alleviate symptoms and improve quality of life
    • A person may receive palliative care and curative care at the same time

    3) Does insurance cover palliative care?

    • Some treatments and medications may be covered by Medicare, Medicaid, and private insurance

    4) What is a palliative care consult?

    • In the hospital, an attending physician might ask for a palliative care consult for a patient. The palliative care team, which may include doctors, nurses, and social workers, can meet with a patient to help determine what the patient’s goals are and how their symptoms can be best managed

    Hospice

    1) Who receives hospice care?

    • Someone with a serious illness and a life expectancy less than 6 months

    2) What is hospice care?

    • Care for patients who are close to dying from an illness. The goal of hospice care is to make a person more comfortable for the time he/she has left
    • A person’s hospice team may include doctors, nurses, social workers, chaplains, physical therapists, etc
    • Hospice care is not meant to cure a person’s illness

    3) Once a person is enrolled in hospice, can he/she leave?

    • If a person’s health improves or he/she wishes to leave stop hospice care, he/she can do so at any time

    4) Where is hospice care provided?

    • Hospice services can be provided wherever the person lives – for example, at home, in a nursing facility or long-term care facility

    5) What role do family and friends have in home hospice?

    • In home hospice, most of the care is provided by family and friends. Hospice does not include a nurse in the home 24 hours a day, though hospice staff is on call for emergencies 24/7
    • In the beginning, it is usually not necessary for someone to be with the patient at all times, but hospice generally recommends that someone is there continuously later in the process

    6) Does insurance cover hospice?

    • Hospice care can paid for by Medicare Hospice Benefit, Medicaid Hospice Benefit, and most private insurers

    7) What is NOT covered by hospice benefits?          

    • Treatments and medications intended to cure your illness
    • Care from another provider that is the same care that you receive from your hospice team
    • Nursing home room and board
    • Hourly care

    8) Can a person receive radiation or chemotherapy treatment in hospice?

    • Radiation and chemotherapy treatments are generally considered aggressive treatments with curative goals, and are not covered by insurance under hospice care
    • There are some cases in which radiation and chemotherapy may help relieve symptoms related to the disease process, and this can be discussed with the physician

    9) Does hospice care hasten death?

    • No, studies show that hospice care does not hasten death

    Pain at the End-of-Life

    1) How effective is pain management at the end of life.

    • Pain management is generally very effective, using a combination of medications, counseling, and therapies

    2) What are the side effects of taking pain medications?

    • Side effects can include grogginess, nausea or constipation. Many side effects go away or fade over time as a person’s body becomes used to the medicine. Some people may decide to live with a little pain rather than experience some of the side effects

    Artificial Hydration and Nutrition

    1) What is it?

    • When a person is unable to swallow, artificial hydration and nutrition may be used to help them get the water and nutrients they need while they recover

    2) What are the different methods of artificial nutrition and hydration?

    • Artificial feeding may be done through an intravenous catheter, which is a thin tube that is placed in a vein under the patient’s skin
    • Another method is through a nasogastric (NG) tube, which is put through the nose, down the throat, and into the stomach. An NG tube can only be in place for 1-4 weeks. If the patient needs artificial feeding for a longer period, a percutaneous endoscopic gastrostomy (PEG) tube can be placed directly into the wall of the stomach

    3) What are the benefits?

    • A person with a temporary illness can benefit greatly from artificial feeding, as it can provide the nutrients they need while they recover
    • A person with a terminal illness who is dying may benefit very little from artificial feeding, and in fact artificial feeding can in crease suffering in these patients

    4) What are the risks?

    • Artificial nutrition and hydration at the end of life can worsen some physical symptoms such as swelling, shortness of breath, diarrhea, vomiting or incontinence. It is important to remember that a person with a serious, life-limiting illness may lose the ability or interest to eat food and drink liquids themselves, because of the disease, not because of the absence of food and liquid
    • Other risks include infections and fluid overload

    5) What happens if it’s not given?

    • People who don’t receive artificial nutrition or hydration will eventually fall into a deep sleep (coma) and usually die within 1 to 3 weeks
    • Studies have shown that the majority of dying patients never experience thirst or hunger, and in those who do, small amounts of food and water relieves these symptoms

    CPR and Defibrillation

    1) What is CPR?

    • If a person’s heart stops beating, the physician repeatedly pushes on the person’s chest with great force

    2) What is defibrillation?

    • If a person’s heart stops beating and CPR does not work, electric shock (defibrillation) may be used in attempt to restart the heart

    3) What are the risks?

    • Because great force is necessary for CPR, it can cause broken ribs or a collapsed lung

    4) How effective is CPR?

    • Often, CPR and defibrillation does not succeed in restarting the heart, especially in older patients with other underlying conditions

    Intubation and Ventilation

    1) What is intubation?

    • Intubation and ventilation are used when a person needs help breathing or completely stops breathing
    • A tube is inserted down the throat to deliver air to the lungs. This tube is then attached to a ventilator, a machine that controls how much air is pushed through the tube
    • Because the tube can be uncomfortable, patients are often sedated

    2) What is a tracheotomy?

    • If a person needs ventilator support for more than a few days, a tracheotomy is often recommended because it is more comfortable and may not require sedation
    • This procedure is a small bedside surgery

    3) How do these procedures affect quality of life?

    • Patients who are ventilated via intubation or tracheotomy cannot talk normally, and cannot eat or drink through their mouth

    Pacemakers and ICDs

    1) Should a pacemaker be turned off?

    • A pacemaker is a device that keeps a heartbeat regular. Generally it will not keep a dying person alive, and does not need to be turned off at the end of life. If a person’s heart is entirely dependent on the pacemaker, it may prolong the dying process

    2) Should an ICD be turned off?

    • An ICD, or internal cardiac defibrillator, is a pacemaker that also sends a high-voltage shock to the heart when it slows or stops. It is often recommended that the defibrillating shocks are turned off at the end of life, as they are painful and anxiety provoking, and prevent a peaceful death

    Palliative Chemotherapy

    1) What is it?

    • Palliative chemotherapy is a term for chemotherapy that is intended to prolong survival and reduce symptom burden, and not to cure. Studies have not shown improvement in quality of life in patients with advanced metastatic cancer who receive palliative chemo

    Kidney Dialysis

    1) What is it?

    • Dialysis is a life-support treatment that filters harmful wastes from a person’s blood. Dialysis is not a cure for kidney failure, but replaces many of the kidney’s functions. Dialysis is associated with many serious side effects, but for many people, the benefits of dialysis outweigh the burden of its side effects. However, especially in people with terminal illnesses in addition to kidney failure, dialysis may prevent a person from having the quality of life that is acceptable to him/her

    Clinical Trials

    1) What is an early phase trial?

    • Phase I and II trials are the first assessments of a new treatment in human subjects. The purpose of Phase 1 trials is to establish safety limits and optimal dosing, and patient’s infrequently experience a direct benefit from their participation. Because less is known about possible benefits and risks, there are usually only a small number of participants, who would not be helped by other known treatments 

    Author: Amanda Su, Weill Cornell Medical College, New York, NY.

     

    References:

    Contact Information

    Center for Research on End-of-Life Care Weill Cornell Medical College 525 E 68th St, Box 39, 1414 Baker Pavilion New York, NY 10065 Phone: (212) 746-4409