When a patient's health care team determines that the cancer can no longer be controlled, medical testing and cancer treatment often stop. But the patient's care continues. The care focuses on making the patient comfortable. The patient receives medications and treatments to control pain and other symptoms, such as constipation, nausea, and shortness of breath. Some patients remain at home during this time, while others enter a hospital or other facility. Either way, services are available to help patients and their families with the medical, psychological, and spiritual issues surrounding dying. A hospice often provides such services.
The time at the end of life is different for each person. Each individual has unique needs for information and support. The patient's and family's questions and concerns about the end of life should be discussed with the health care team as they arise.
The following information can help answer some of the questions that many patients, their family members, and caregivers have about the end of life.
1. How long is the patient expected to live?
Patients and their family members often want to know how long a person is expected to live. This is a hard question to answer. Factors such as where the cancer is located and whether the patient has other illnesses can affect what will happen. Although doctors may be able to make an estimate based on what they know about the patient, they might be hesitant to do so. Doctors may be concerned about over- or under-estimating the patient's life span. They also might be fearful of instilling false hope or destroying a person's hope.
2. When caring for the patient at home, when should the caregiver call for professional help?
When caring for a patient at home, there may be times when the caregiver needs assistance from the patient's health care team. A caregiver can contact the patient's doctor or nurse for help in any of the following situations:
- The patient is in pain that is not relieved by the prescribed dose of pain medication;
- The patient shows discomfort, such as grimacing or moaning;
- The patient is having trouble breathing and seems upset;
- The patient is unable to urinate or empty the bowels;
- The patient has fallen;
- The patient is very depressed or talking about committing suicide;
- The caregiver has difficulty giving medication to the patient;
- The caregiver is overwhelmed by caring for the patient, or is too grieved or afraid to be with the patient; or
- At any time the caregiver does not know how to handle a situation.
3. What are some ways that caregivers can provide emotional comfort to the patient?
Everyone has different needs, but some emotions are common to most dying patients. These include fear of abandonment and fear of being a burden. They also have concerns about loss of dignity and loss of control. Some ways caregivers can provide comfort are as follows:
- Keep the person company—talk, watch movies, read, or just be with the person.
- Allow the person to express fears and concerns about dying, such as leaving family and friends behind. Be prepared to listen.
- Be willing to reminisce about the person's life.
- Avoid withholding difficult information. Most patients prefer to be included in discussions about issues that concern them.
- Reassure the patient that you will honor advance directives, such as living wills.
- Ask if there is anything you can do.
- Respect the person's need for privacy.
- 4. What are the signs that death is approaching? What can the caregiver do to make the patient comfortable?
Certain signs and symptoms can help a caregiver anticipate when death is near. They are described below, along with suggestions for managing them. It is important to remember that not every patient experiences each of the signs and symptoms. In addition, the presence of one or more of these symptoms does not necessarily indicate that the patient is close to death. A member of the patient's health care team can give family members and caregivers more information about what to expect.
Drowsiness, increased sleep, and/or unresponsiveness (caused by changes in the patient's metabolism).
The caregiver and family members can plan visits and activities for times when the patient is alert. It is important to speak directly to the patient and talk as if the person can hear, even if there is no response. Most patients are still able to hear after they are no longer able to speak. Patients should not be shaken if they do not respond.
Confusion about time, place, and/or identity of loved ones; restlessness; visions of people and places that are not present; pulling at bed linens or clothing (caused in part by changes in the patient's metabolism). Gently remind the patient of the time, date, and people who are with them. If the patient is agitated, do not attempt to restrain the patient. Be calm and reassuring. Speaking calmly may help to re-orient the patient.
Decreased socialization and withdrawal (caused by decreased oxygen to the brain, decreased blood flow, and mental preparation for dying).
Speak to the patient directly. Let the patient know you are there for them. The patient may be aware and able to hear, but unable to respond. Professionals advise that giving the patient permission to “let go” can be helpful.
Decreased need for food and fluids and loss of appetite (caused by the body's need to conserve energy and its decreasing ability to use food and fluids properly).
Allow the patient to choose if and when to eat or drink. Ice chips, water, or juice may be refreshing if the patient can swallow. Keep the patient's mouth and lips moist with products such as glycerin swabs and lip balm.
Loss of bladder or bowel control (caused by the relaxing of muscles in the pelvic area).
Keep the patient as clean, dry, and comfortable as possible. Place disposable pads on the bed beneath the patient and remove them when they become soiled.
Darkened urine or decreased amount of urine (caused by slowing of kidney function and/or decreased fluid intake).
Caregivers can consult a member of the patient's health care team about the need to insert a catheter to avoid blockage. A member of the health care team can teach the caregiver how to take care of the catheter if one is needed.
Skin becomes cool to the touch, particularly the hands and feet; skin may become bluish in color, especially on the underside of the body (caused by decreased circulation to the extremities).
Blankets can be used to warm the patient. Although the skin may be cool, patients are usually not aware of feeling cold. Caregivers should avoid warming the patient with electric blankets or heating pads, which can cause burns.
Rattling or gurgling sounds while breathing, which may be loud; breathing that is irregular and shallow; decreased number of breaths per minute; breathing that alternates between rapid and slow (caused by congestion from decreased fluid consumption, a buildup of waste products in the body, and/or a decrease in circulation to the organs).
Breathing may be easier if the patient's body is turned to the side and pillows are placed beneath the head and behind the back. Although labored breathing can sound very distressing to the caregiver, gurgling and rattling sounds do not cause discomfort to the patient. An external source of oxygen may benefit some patients. If the patient is able to swallow, ice chips also may help. In addition, a cool mist humidifier may help make the patient's breathing more comfortable.
Turning the head toward a light source (caused by decreasing vision).
Leave soft, indirect lights on in the room.
Increased difficulty controlling pain (caused by progression of the disease).
It is important to provide pain medications as the patient's doctor has prescribed. The caregiver should contact the doctor if the prescribed dose does not seem adequate. With the help of the health care team, caregivers can also explore methods such as massage and relaxation techniques to help with pain.
Involuntary movements (called myoclonus), changes in heart rate, and loss of reflexes in the legs and arms are additional signs that the end of life is near.
5. What are the signs that the patient has died?
- There is no breathing or pulse.
- The eyes do not move or blink, and the pupils are dilated (enlarged). The eyelids may be slightly open.
- The jaw is relaxed and the mouth is slightly open.
- The body releases the bowel and bladder contents.
- The patient does not respond to being touched or spoken to.
- 6. What needs to be done after the patient has died?
After the patient has passed away, there is no need to hurry with arrangements. Family members and caregivers may wish to sit with the patient, talk, or pray. When the family is ready, the following steps can be taken.
- Place the body on its back with one pillow under the head. If necessary, caregivers or family members may wish to put the patient's dentures or other artificial parts in place.
- If the patient is in a hospice program, follow the guidelines provided by the program. A caregiver or family member can request a hospice nurse to verify the patient's death.
- Contact the appropriate authorities in accordance with local regulations. If the patient has requested not to be resuscitated through a Do-Not-Resuscitate (DNR) order or other mechanism, do not call 911.
- Contact the patient's doctor and funeral home.
- When the patient's family is ready, call other family members, friends, and clergy.
- Provide or obtain emotional support for family members and friends to cope with their loss.
Coping with Loss - required reading
More than ever before, people with cancer and their families are being asked to take part in decisions about end-of-life care. Yet, most people still do not discuss end-of-life care at all, even if they are seriously ill. This fact sheet provides patients with an outline for thinking about these issues and some guidelines for discussion with their doctors, families, and loved ones. This fact sheet is also designed to help patients understand the medical, legal, and personal choices they may face in the future.
1. What rights do patients have regarding their medical treatment?
Patients are entitled to complete information about their illness and how it may affect their lives, and they have the right to share or withhold that information from others. People with cancer should also be informed about any procedures and treatments that are planned, the benefits and risks, and any alternatives that may be available. Patients may be asked to sign an "informed consent" form, which includes this information. Before signing such a form, patients should read it carefully and ask the doctor any questions they might have.
Patients have the right to make decisions about their own treatment. These decisions may change over time. In the face of worsening disease, some patients may want to try every available drug or treatment in the hope that something will be effective. Other patients may choose to forgo aggressive medical treatment. Many patients turn to family members, friends, or caregivers for advice. But it is the patient's decision how much or how little treatment to have. Sometimes a patient is unable to make this decision, due to severe illness or a change in mental condition. That is why it is important for people with cancer to make their wishes known in advance.
2. What is end-of-life care? What are advance directives?
End-of-life care is a general term that refers to the medical and psychosocial care given in the advanced or terminal stages of illness. Advance directives are the legal documents, such as the living will, durable power of attorney and health care proxy, which allow people to convey their decisions about end-of-life care ahead of time. Advance directives provide a way for patients to communicate their wishes to family, friends, and health care professionals and to avoid confusion later on, should they become unable to do so.
Ideally, the process of discussing and writing advance directives should be ongoing, rather than a single event. Advance directives can be modified as a patient's situation changes. Even after advance directives have been signed, patients can change their minds at any time.
3. Why are advance directives important?
Complex choices about end-of-life care are difficult even when people are well. If a person is seriously ill, these decisions can seem overwhelming. But patients should keep in mind that avoiding these decisions when they are well will only place a heavier burden on them and their loved ones later on. Communicating wishes about end-of-life care will ensure that people with cancer face the end of their lives with dignity and with the same values by which they have lived.
4. Why is it important to write a will?
A will is important so that patients can give instructions about distribution of their money and property when they die. Patients can name a trusted family member, friend, or professional to handle their personal affairs (also known as an Executor). It is advisable to seek the expert advice of a lawyer in drawing up a will so that the decisions made about taxes, beneficiaries, and asset distribution will be legally binding. This process can relieve a patient's family and friends of an enormous burden in case of disputes or questions about allocation of the patient's assets.
5. What is a living will?
A living will is a set of instructions documenting a person's wishes about medical care intended to sustain life. It is used if a patient becomes terminally ill, incapacitated, or unable to communicate or make decisions. Everyone has the right to accept or refuse medical care. A living will protects the patient's rights and removes the burden for making decisions from family, friends, and physicians.
There are many types of life-sustaining care that should be taken into consideration when drafting a living will. These include:
the use of life-sustaining equipment (dialysis machines, ventilators, and respirators);
- "do not resuscitate" orders; that is, instructions not to use CPR if breathing or heartbeat stops;
- artificial hydration and nutrition (tube feeding);
- withholding of food and fluids;
- palliative/comfort care; and
- organ and tissue donation.
It is also important to understand that a decision not to receive "aggressive medical treatment" is not the same as withholding all medical care. A patient can still receive antibiotics, nutrition, pain medication, radiation therapy, and other interventions when the goal of treatment becomes comfort rather than cure. This is called palliative care, and its primary focus is helping the patient remain as comfortable as possible. Patients can change their minds and ask to resume more aggressive treatment. If the type of treatment a patient would like to receive changes, however, it is important to be aware that such a decision may raise insurance issues that will need to be explored with the patient's health care plan. Any changes in the type of treatment a patient wants to receive should be reflected in the patient's living will.
Once a living will has been drawn up, patients may want to talk about their decisions with the people who matter most to them, explaining the values underlying their decisions. Most states require that the document be witnessed. Then it is advisable to make copies of the document, place the original in a safe, accessible place, and give copies to the patient's doctor, hospital, and next of kin. Patients may also want to consider keeping a card in their wallet declaring that they have a living will and where it can be found.
6. What is a health care proxy and durable power of attorney for health care?
A health care proxy is an agent (a person) appointed to make a patient's medical decisions if the patient is unable to do so. Generally, people assign someone they know well and trust to represent their preferences when they can no longer do so. Patients should be sure to ask this person for agreement to act as their agent. An agent may have to exercise judgment in the event of a medical decision for which the patient's wishes are not known.
The durable power of attorney for health care is the legal document that names a patient's health care proxy. Once written, it should be signed, dated, witnessed, notarized, copied, distributed, and incorporated into the patient's medical record.
Patients may also want to appoint someone to manage their financial affairs if they cannot. This is called a durable power of attorney for finances, and is a separate legal document from the durable power of attorney for health care. Patients may choose the same person or someone different from their health care proxy to act as their agent in financial matters.
Where can people with cancer get assistance with their advance directives?
If patients need help making the decisions discussed in this fact sheet, they should not hesitate to call upon family, friends, and other loved ones. Although a lawyer is not needed to complete advance directives, it is important to be aware that each state has its own laws for creating advance directives. Because these laws can vary in important details, special care should be taken to adhere to the laws of the state a patient lives in or is treated in. It is possible that a living will or durable power of attorney signed in one state may not be recognized in another. Appropriate forms can be obtained from health care providers, legal offices, Offices on Aging, and state health departments.
Advance Planning For End-of-Life Care
Nina Garas, M.D.
Emory University School of Medicine
Steven Z. Pantilat, M.D.
University of California, San Francisco School of Medicine
Physicians and other healthcare workers have long struggled with decisions regarding care for patients at the end of life. An important component of this care involves assessing and understanding patient preferences for care through ongoing discussions with competent adult patients and/or their family members or surrogates. Advance care planning protects patient autonomy and helps to assure that their health and medical treatment wishes are implemented. Good communication at the end of life can also help patients achieve closure and meaning in the final days of their life.
Over the past 20 years, public consciousness regarding planning for end-of-life care has been raised through several seminal court cases, such as those involving Karen Ann Quinlan and Nancy Cruzan. These cases and the public interest they helped engender led to legislation promoting patients' rights to determine their care at the end of life. For example, Natural Death Acts (statutes passed by state legislatures that assert a person's right to make decisions regarding terminal care) have helped promote the use of living wills (described below). In addition, in 1990 the federal Patient Self-Determination Act (PSDA) was passed by Congress to encourage competent adults to complete advance directives. The PSDA requires hospitals, nursing homes, health maintenance organizations, and hospices that participate in Medicare and Medicaid to ask if patients have advance directives, to provide information about advance directives, and to incorporate advance directives into the medical record.
Advance directives are any expression by a patient intended to guide care, should they lose their medical decision making capacity. Although both oral and written statements are valid, the added effort required to complete written statements gives them greater weight. In addition to their use when patients lose competence, advance directives also help patients consider the type of care they would want in the future, even if they retain decision making capacity. Advance directives have legal validity in almost every state.
There are 2 principal forms of written advance directives: living wills and durable powers of attorney for healthcare. A living will is a document that allows an individual to indicate the interventions he or she would want if he or she is terminally ill, comatose with no reasonable hope of regaining consciousness, or in a persistent vegetative state with no reasonable hope of regaining significant cognitive function. A durable power of attorney for healthcare (DPOA-HC) is a more comprehensive document that allows an individual to appoint a person to make healthcare decisions for him or her should he or she lose decision making capacity.
Prevalence and Severity of the Target Safety Problem
Respecting patient preferences regarding end-of-life care requires a well-coordinated approach. Problems can arise in both documenting patient preferences and ensuring that preferences are available and respected at the time they are needed. In addition, inadequate communication with patients can compromise the goal of respecting patient preferences for end-of-life care through a variety of mechanisms.
Failure to Document Preferences
The PSDA was a legislative solution (see Chapter 55) designed to increase rates of completed advance directives. Although there was initial hope that PSDA would markedly increase rates of advance directive documentation, by the early 1990s it was clear that the impact was small. At that time, a large multicenter randomized trial, the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT), was undertaken to improve advance care planning. SUPPORT represents one of the largest and most comprehensive efforts to describe patient preferences in seriously ill patients, and to evaluate how effectively patient preferences are communicated. SUPPORT cost 28 million dollars and enrolled 9100 seriously ill patients. In SUPPORT, a trained nurse facilitator provided prognostic information to patients and medical staff, discussed patient preferences with patients and families, and facilitated communication between patients and physicians.
Neither the PSDA legislation nor the SUPPORT intervention had major impacts on the documentation of patients' preferences regarding end-of-life care. Teno et al reported on the documentation of advance directives at 3 points: before PSDA, after PSDA, and after the SUPPORT intervention. The percentage of patients with an advance directive was unchanged in all 3 groups, but documentation of those directives increased at each stage, from 6% to 35% to 78% in the SUPPORT intervention group. Despite this increase in documentation, only 12% of patients with an advance directive had talked with a physician when completing the document and only 25% of physicians were aware of their patients' advance directives. SUPPORT found that only 23% of seriously ill patients had talked to their doctors about their wishes concerning cardiopulmonary resuscitation (CPR) and that patient-physician discussions and decisions were uncommon even in seriously ill patients whose death was predictable. Another study that surveyed elders in community settings found that the vast majority (81%) stated their desire to discuss their preferences with their physicians if they were terminally ill, but only 11% had done so. As these studies demonstrate, patients often want to talk about death and dying but expect physicians to bring up the issues.
Ensuring that Preferences are Available and Respected
Even when advance directives are prepared, studies show they often do not change interventions at the end of life. Advance directives are frequently not available, recognized or applied, nor do they help reduce hospital resource use. There are multiple reasons why advance directives may go unrecognized.8 Admitting clerks may fail to document or incorrectly document the status of a directive on admission to the hospital. Patients and families often do not inform the hospital physician or admitting clerk about their advance directives, or fail to bring documentation to the hospital. In one survey of 200 patients, only 18% had filled out an advance directive and of these, 50% had secured the only copy in a safety deposit box! A copy of the advance directive is often not transferred from the nursing home to the hospital on admission. In a study by Morrison, physicians documented advance directives or discussions with appointed proxies about treatment decisions in only 11% of admission notes.
Although the goal of advance directives is to ensure that patients receive treatment that is consistent with their preferences, to date there is no evidence that documenting advance directives leads to this outcome. In SUPPORT, there was no evidence that increasing the rates of advance directives resulted in care more consistent with patients' preferences.10 This finding was concordant with a study of nursing home patients and their family members regarding preferences for aggressive treatment at the end of life. There, 25% of patients received care that was inconsistent with their previously expressed wishes. The problem may not be the substance of advance directives per se, but rather in the manner in which clinicians approach them. Physicians may be hesitant to initiate discussions of advance directives with patients, especially early in the course of an illness.
Despite these shortcomings, advance directives remain the best available approach for helping patients plan future care. These discussions, difficult as they are, help ensure that patients receive care consistent with their values and goals, spare the patient inappropriate interventions, and help maintain dignity during the dying process.
In order to improve the quality of end-of-life care, physicians need to effectively communicate with their patients and understand their preferences for care. Several studies have documented imperfections in physician-patient communication. Several studies have demonstrated that physicians often misunderstand or are unaware of their patients' preferences for care. Furthermore, physician prediction of patients' preferences for resuscitation are no better than random.
In summary, the published literature demonstrates significant problems in all areas crucial to advance care planning and ascertainment of patient preferences, transmission of information to appropriate care settings, and respecting those preferences. The provision of unwanted end-of-life care is an adverse event that can potentially be avoided by the implementation of effective patient safety practices.
Opportunities for Impact
Patients with chronic or life-limiting illnesses make up a large proportion of the adult primary care population. Almost three-quarters of the 2.3 million Americans that die each year are 65 years of age or older. By the year 2030, people older than 65 will compromise 20% of the total population (70 million people), compared with 13% in 1994. Today's average life expectancy is 75.5 years, and the leading causes of death are heart disease, cancer and stroke. Data from 1995 estimated that these causes accounted for 62% of all deaths and 67% of deaths for those age 65 and over. The overall picture is of an aging population, with many individuals living for several decades (often with chronic diseases) after the possibility of death becomes more than theoretical.
SUPPORT documented serious problems with terminal care. Physicians did not implement patients' refusals of interventions. When patients wished to forgo CPR, a do not resuscitate order was never written in about 50% of cases.4 While 90% of Americans say they want to die at home, 4 out of 5 die in a hospital or other healthcare facility. The SUPPORT study showed that only 35% of the study patients had an advance directive. These patients had an approximate six month mortality rate of 50%.
Physicians and the public also commonly overestimate the effectiveness of CPR. In reality, in-hospital cardiac arrests have a survival rate of about 15%. For patients over 65 the survival rate is about 10-11%, and 3.5% for patients over age 85.19 Elderly nursing home patients with out-of-hospital arrest only have 1-2% survival.20 Studies have shown that when patients are aware of the real survival rates for CPR, they are less likely to desire this intervention.
Evidence for Effectiveness of the Practice
Documenting Preferences and Ensuring that they are Available and Respected
A Physician Order form for Life-Sustaining Treatment (the POLST)
In the mid-1990s, a task force of ethicists and clinicians at the Oregon Health Sciences University developed a new Do Not Resuscitate (DNR) order form called POLST (Physician Orders for Life-Sustaining Treatment). POLST is a comprehensive two-page order form that documents a patient's preference for life-sustaining treatments. The form is designed to record a patient's wishes clearly and simply. The accompanying POLST wallet card is included as Figure 49.1; the complete POLST form and materials can be obtained from the Oregon Health Sciences University's Center for Ethics in Health Care (http://www.ohsu.edu/ethics/polst.htm).
Tolle et al examined the extent to which POLST ensured that nursing home residents' wishes were honored for DNR orders, and for hospital admission only if comfort measures failed. None of the 180 patients who completed POLST received CPR, ICU care, or ventilator support, and only 2% were hospitalized to extend life. The study subjects had low rates of transfer for aggressive life-extending treatments and high levels of comfort care.
Since 1995, more than 220,000 copies of POLST have been distributed throughout the state. Data from 1999 suggest, albeit circumstantially, that this initiative may be working. In 1996, Oregon's in-hospital mortality rate was 31%, compared with the national average of 56%.
Lee et al studied the effectiveness of POLST in a Program of All-Inclusive Care for the Elderly (PACE) in Portland, Oregon. They retrospectively reviewed POLST instructions for each of the 58 participants and whether or not each of the treatments addressed by the POLST was administered in the final 2 weeks of life. The POLST specified DNR for 50 participants (93%); CPR use was consistent with these instructions for 49 participants (91%). The participants also designated the level of care they preferred as either comfort care, limited, advanced, or full intervention. Interventions administered were at the level specified in only 25 cases (46%), with less frequent deviations in antibiotic administration, administration of IV fluids, and placement of feeding tubes. The investigators concluded that the POLST effectively limits the use of some life-sustaining interventions, but that further investigation is needed into the factors that lead physicians to deviate from patients' stated preferences about other treatments.
Administrative Initiatives to Ascertain Preferences on Admission to Hospital or Nursing Home
In addition to POLST, some medical centers have developed admission order forms to document patient preferences regarding end of life. These forms require healthcare personnel to inquire about advance directives, resuscitation preferences, artificial fluids and nutrition, etc. This approach, promoted by the passage of the PSDA, may be effective in promoting provider-patient discussions about end-of-life wishes and prevent unwanted treatments. However, there are no data documenting the effectiveness of this strategy.
Ascertaining Preferences in the Outpatient Setting
As with other forms of computerized decision support (Chapter 53), computer-generated reminders for primary caregivers can increase the rates of discussion of advance directives and completion of advance directive forms among elderly outpatients with serious illnesses. Dexter et al performed a randomized, controlled trial to test the effectiveness of computerized reminders. The participants were 1009 patients and 147 primary care physicians in an outpatient setting. Physicians that received computer-generated reminders that recommended discussion of one or both of 2 types of advance directives were compared with physicians who received no reminders. Physicians who did not receive reminders (controls) discussed and completed advance directives in only 4% of the patients On the other hand, physicians who received both types of reminders discussed (24%) and completed (15%) advance directives significantly more frequently.24
The Portability of Advance Directives between Hospitals and Nursing Homes
Ghusn et al retrospectively studied the relationship between inter-institutional communication and continuity of advance directives from hospital to nursing home settings. Having a hospital discussion about advance directives or having a hospital DNR order were associated with a higher rate of advance directive discussions in nursing homes. Hospital DNR orders were continued for 93% of patients discharged to the hospital-affiliated nursing home and 41% of patients discharged to the community nursing home. Specific communication of hospital DNR status to the receiving nursing homes was associated with better continuity of DNR orders. The authors concluded that completing advance directives before patients are discharged to nursing homes, communicating advance directives to the receiving home, and providing follow-up discussions at the nursing home might improve the continuity of advance directives between hospitals and nursing homes.
Advanced Care Planning - required reading
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