Continuing education online courses in End of Life Health Care.N11. End of Life Care: End of Life Health Care, 3 CE-hours, $21
Professor Rudolf Klimes, PhD, welcomes you to this online course. Keep going.
START the course here. TAKE the exam at the end. PAY after the exam.
Course Description: 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.
Objectives: At the end of this course, you will describe 1. The nature end of life care, 2. Advance Directive and hospice care, 3. Spirituality in care 4. The place of end care.
Course Format: Online linked resources and lectures that you can use anytime 24/7. One multi-choice test.
Course Developers and Instructors: R. Klimes, PhD, MPH (John Hopkins U), author of articles on End of Life Spiritual and Physical Care.
Course Time: About thirty hours for online study, test taking with course evaluation feedback and certificate printing.
Course Test: Click here for the self-correcting test that requires 75% for a passing grade.
N11 End-of-life-health-care: What it Takes. 3 hrs.(Or as the first module of N01 as part of the 30 hrs course)
1. The Nature of End of Life Care
The following article is from the National Cancer Institute Fact Sheet, “End-of-Life Care: Questions and Answers”.
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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- What additional resources offer information about end-of-life issues?The following National Cancer Institute (NCI) resources are available by calling the Cancer Information Service (CIS) (see below) at 1–800–4–CANCER (1–800–422–6237). They can also be accessed on the NCI’shttp://www.cancer.gov Web site at http://www.cancer.gov/cancer_information/coping/ by clicking on the title under “End-of-Life Issues.”
- The NCI fact sheet Hospice provides information about hospice care and includes contact information for hospice organizations.
- Advance Directives is an NCI fact sheet that discusses a patient’s rights regarding medical treatment.
- The NCI fact sheet Home Care for Cancer Patients provides information and resources related to home care services.
- The NCI booklet Advanced Cancer: Living Each Day provides practical support to cancer patients, families, and friends.
- PDQ® supportive care summaries on loss, grief, and bereavement.
2. Advance Directives
The following article is from the NIH National Cancer Institute fact sheet on Advance Directives:
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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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. Patients can also call an organization such as Cancer Care, Inc., for help with this process. Cancer Care, Inc., provides free, professional assistance to people with any type of cancer, at any stage of illness, and to their families. Patients and their families may write to Cancer Care, Inc., 275 Seventh Avenue, New York, NY 10001; call 1–800–813–HOPE (1–800–813–4673); or visit their Web site at http://www.cancercare.org on the Internet.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.
This fact sheet was adapted with permission from Cancer Care, Inc., a nonprofit social service agency whose mission is to help people with cancer and their families. Cancer Care’s toll-free telephone number is 1–800–813–HOPE. The National Cancer Institute and Cancer Care, Inc., are in partnership to increase awareness of the psychosocial issues faced by cancer patients and to provide resources to cancer patients and their families.
3. Hospice Care
Hospice is a concept of care that involves health professionals and volunteers who provide medical, psychological, and spiritualsupport to terminally ill patients and their loved ones. Hospice stresses quality of life—peace, comfort, and dignity. A principal aim of hospice is to control pain and other symptoms so the patient can remain as alert and comfortable as possible. Hospice services are available to persons who can no longer benefit from curative treatment; the typical hospice patient has a life expectancy of 6 months or less. Hospice programs provide services in various settings: the home, hospice centers, hospitals, or skilled nursing facilities. Patients’ families are also an important focus of hospice care, and services are designed to provide them with the assistance and support they need.
The following resources may offer assistance for people seeking hospice care and information:
- The National Hospice and Palliative Care Organization (NHPCO) is a membership organization representing programs and professionals that provide hospice and palliative care in the United States. NHPCO’s mission is to lead and mobilize social change for improved care at the end of life. NHPCO offers publications, information about how to find a hospice, and information about the financial aspects of hospice. Some Spanish-language publications are available, and staff are able to answer calls in Spanish.
Address: Suite 625
1700 Diagonal Road
Alexandria, VA 22314
E-mail: email@example.com Web site: http://www.nhpco.org
- The Hospice Association of America (HAA) is an advocate for hospice organizations. It serves hospices that are freestanding and community-based, as well as those affiliated with home care agencies and hospitals. HAA also distributes a number of publications about hospice to consumers. Publications can be viewed by accessing the organization’s Web site. Topics include information about the history of hospice, the benefits of choosing a hospice program, hospice-related statistics, and locations of hospice organizations.
Address: 228 Seventh Street, SE.
Washington, DC 20003
Telephone: 202–546–4759 Web site: http://www.nahc.org/HAA/home.html
- The Hospice Education Institute serves a wide range of individuals and organizations interested in improving and expanding hospice and palliative care throughout the United States and around the world. The Institute works to inform, educate, and support people seeking or providing care for the dying and the bereaved. HOSPICELINK, a service of the Institute, maintains a computerized database and up-to-date directory of all hospice and palliative care programs in the United States. HOSPICELINK helps patients and their families find hospice and palliative care programs, and provides general information about the principles and practices of good hospice and palliative care.
Address: 3 Unity Square
Post Office Box 98
Machiasport, ME 04655–0098
E-mail: firstname.lastname@example.org Web site: http://www.hospiceworld.org
- Hospice Net is an organization that works exclusively through the Internet. This organization’s Web site provides hospice-related information for patients, children, and caregivers. It contains articles regarding end-of-life issues and is dedicated to providing information and support to patients facing life-threatening illnesses and to their families and friends.
Address: Suite 51
401 Bowling Avenue
Nashville, TN 37205–5124
E-mail: email@example.com Web site: http://www.hospicenet.org
- The American Cancer Society (ACS) provides free fact sheets and publications about hospice. The address of a local ACS chapter can be obtained by calling the chapter’s toll-free telephone number.
Telephone: 1–800–ACS–2345 (1–800–227–2345) Web site: http://www.cancer.org
For many people, some hospice expenses are paid by health insurance plans (either group policies offered by employers or individual policies). Information about the types of medical costs covered by a particular policy is available from an employee’s personnel office, a hospital or hospice social worker, or an insurance company. Medical costs that are not covered by insurance are sometimes tax deductible.
Medicare, a health insurance program for the elderly or disabled that is administered by the Centers for Medicare & Medicaid Services (CMS) of the Federal Government, provides payment for hospice care. When a patient receives services from a Medicare-certified hospice, Medicare insurance provides substantial coverage, even for some services that would not be covered outside of a hospice program. To find a Medicare-certified hospice program, people can ask their doctor, a state hospice organization, or the state health department. The telephone number for state hospice organizations and health departments can be found in the state government section of a local telephone directory. The Medicare hotline can answer general questions about Medicare benefits and coverage, and can refer people to their regional home health intermediary for information about Medicare-certified hospice programs. The toll-free telephone number is 1–800–MEDICARE (1–800–633–4227); deaf and hard of hearing callers with TTY equipment can call 1–877–486–2048. The booklet Medicare Hospice Benefits is the official publication for Medicare hospice benefits. This booklet, which outlines the type of hospice care that is covered under Medicare and provides detailed information about hospice coverage, is available athttp://www.medicare.gov/Publications/Pubs/pdf/02154.pdf on the Internet.
Medicaid, a Federal program that is part of CMS and is administered by each state, is designed for patients who need financial assistance for medical expenses. Information about coverage is available from local state welfare offices, state public health departments, state social services agencies. In addition, local civic, charitable, or religious organizations may be able to help patients and their families with hospice expenses.
4. Spirituality in Care
National surveys consistently support the idea that religion and spirituality are important to most individuals in the general population. More than 90% of adults express a belief in God, and slightly more than 70% of individuals surveyed identified religion as one of the most important influences in their lives. Research indicates that patients commonly rely on spirituality and religion to help them deal with serious physical illnesses, expressing a desire to have specific spiritual and religious needs and concerns acknowledged or addressed by medical staff. A survey of hospital inpatients found that 77% of patients reported that physicians should take patients’ spiritual needs into consideration, and 37% wanted physicians to address religious beliefs more frequently. A pilot study of 14 African American men with a history of prostate cancer found that most had discussed spirituality and religious beliefs with their physicians; they expressed a desire for their doctors and clergy to be in contact with each other.
This summary will review the following topics:
- How religion and spirituality can be usefully conceptualized within the medical setting.
- The empirical evidence for the importance of religious and spiritual factors in adjustment to illness in general and to cancer in particular.
- The range of assessment approaches that may be useful in a clinical environment.
- Various models for management and intervention.
- Resources for clinical care.
Paying attention to the religious or spiritual beliefs of seriously ill patients has a long tradition within inpatient medical environments. Addressing such issues has been viewed as the domain of hospital chaplains or a patient’s own religious leader. In this context, systematic assessment has usually been limited to identifying a patient’s religious preference; responsibility for management of apparent spiritual distress has been focused on referring patients to the chaplain service.[4–6] Although health care providers may address such concerns themselves, they are generally very ambivalent about doing so, and there has been relatively little systematic investigation addressing the physician’s role. These issues, however, are being increasingly addressed in medical training. Acknowledging the role of all healthcare professionals in spirituality, a multidisciplinary group from one cancer center developed a four-stage model that allows healthcare professionals to deliver spiritual care consistent with their knowledge, skills, and actions at one of four skill levels.
Interest in and recognition of the function of religious and spiritual coping in adjustment to serious illness, including cancer, has been growing.[10–12] New ways to assess and address religious and spiritual concerns as part of overall quality of life are being developed and tested. Limited data support the possibility that spiritual coping is one of the most powerful means by which patients draw on their own resources to deal with a serious illness such as cancer; however, patients and caregivers may be reluctant to raise religious and spiritual concerns with family members and their health care providers.[13–15] Increased spiritual well-being in a seriously ill population may be linked with lower anxiety about death. Given the importance of religion and spirituality to patients, integrating systematic assessment of such needs into medical care, including outpatient care, is crucial. The development of better assessment tools will make it easier to discern which aspects of religious and spiritual coping may be important in a particular patient’s adjustment to illness.
Of equal importance is the consideration of how and when to address religion and spirituality with patients and the best ways to do so in different medical environments.[17–19] Although addressing spiritual concerns is often considered an end-of-life issue, such concerns may arise at any time after diagnosis. Acknowledging the importance of these concerns and addressing them, even briefly, at diagnosis may facilitate better adjustment throughout the course of treatment and create a context for richer dialogue later in the illness.
- Gallup GH Jr: Religion In America 1996: Will the Vitality of the Church Be the Surprise of the 21st Century? Princeton, NJ: Princeton Religion Research Center, 1996.
- King DE, Bushwick B: Beliefs and attitudes of hospital inpatients about faith healing and prayer. J Fam Pract 39 (4): 349-52, 1994. [PUBMED Abstract]
- Bowie J, Sydnor KD, Granot M: Spirituality and care of prostate cancer patients: a pilot study. J Natl Med Assoc 95 (10): 951-4, 2003. [PUBMED Abstract]
- Zabora J, Blanchard CG, Smith ED, et al.: Prevalence of psychological distress among cancer patients across the disease continuum. Journal of Psychosocial Oncology 15 (2): 73-87, 1997.
- Fitchett G, Meyer PM, Burton LA: Spiritual care in the hospital: who requests it? Who needs it? J Pastoral Care 54 (2): 173-86, 2000 Summer. [PUBMED Abstract]
- Handzo G: Where do chaplains fit in the world of cancer care? J Health Care Chaplain 4 (1-2): 29-44, 1992. [PUBMED Abstract]
- Kristeller JL, Zumbrun CS, Schilling RF: ‘I would if I could’: how oncologists and oncology nurses address spiritual distress in cancer patients. Psychooncology 8 (5): 451-8, 1999 Sep-Oct. [PUBMED Abstract]
- Puchalski C, Romer AL: Taking a spiritual history allows clinicians to understand patients more fully. J Palliat Med 3(1): 129-137, 2000.
- Gordon T, Mitchell D: A competency model for the assessment and delivery of spiritual care. Palliat Med 18 (7): 646-51, 2004. [PUBMED Abstract]
- Pargament KI: The Psychology of Religion and Coping: Theory, Research, Practice. New York, NY: Guilford Press, 1997.
- Koenig HG: Spirituality in Patient Care: Why, How, When, and What. Philadelphia, Pa: Templeton Foundation Press, 2002.
- Koenig HG, McCullough ME, Larson DB: Handbook of Religion and Health. New York, NY: Oxford University Press, 2001.
- Murray SA, Kendall M, Boyd K, et al.: Exploring the spiritual needs of people dying of lung cancer or heart failure: a prospective qualitative interview study of patients and their carers. Palliat Med 18 (1): 39-45, 2004. [PUBMED Abstract]
- McCullough ME, Hoyt WT, Larson DB, et al.: Religious involvement and mortality: a meta-analytic review. Health Psychol 19 (3): 211-22, 2000. [PUBMED Abstract]
- Jenkins RA, Pargament KI: Religion and spirituality as resources for coping with cancer. Journal of Psychosocial Oncology 13 (1/2): 51-74, 1995.
- Chibnall JT, Videen SD, Duckro PN, et al.: Psychosocial-spiritual correlates of death distress in patients with life-threatening medical conditions. Palliat Med 16 (4): 331-8, 2002. [PUBMED Abstract]
- Post SG, Puchalski CM, Larson DB: Physicians and patient spirituality: professional boundaries, competency, and ethics. Ann Intern Med 132 (7): 578-83, 2000. [PUBMED Abstract]
- Sloan RP, Bagiella E, VandeCreek L, et al.: Should physicians prescribe religious activities? N Engl J Med 342 (25): 1913-6, 2000. [PUBMED Abstract]
- Dagi TF: Prayer, piety and professional propriety: limits on religious expression in hospitals. J Clin Ethics 6 (3): 274-9, 1995 Fall. [PUBMED Abstract]
5. Personal End Care
When Treatment Fails, Should Medical Caring Stop?
One woman’s final journey sheds light on the ‘abandonment’ some dying patients feel
TUESDAY, June 20, 2006 — Karen Donley-Hayes’ best friend, Ashley, died of metastatic breast cancer at just 36 years of age.For months, a dedicated team of oncologists, surgeons and nurses had worked night and day to beat the runaway cells that were slowly robbing Ashley of life. Then, one October day, the team effectively admitted defeat and turned the young woman over to hospice and end-of-life care.
Donley-Hayes, of West Farmington, Ohio, remembers sitting with her dying friend in the oncologist’s office. He had left the room.Ashley then asked her, “Well, I want to live till Christmas — do you think that’s possible?” Donley-Hayes, whom Ashley had given medical power of attorney, was left without a reply.
“I remember sitting there, thinking ‘What do we do now — we don’t have anybody to ask these questions of — who do I approach to know where we stand now?’ ” she says.
Ashley died a few weeks later, her devoted husband, parents and best friend — the group her Texas father had dubbed “Ashley’s posse” — at her side till the end.
And yet, in an essay published in the June 21 issue of the Journal of the American Medical Association, Donley-Hayes wonders why Ashley’s medical team couldn’t have done just a little more in the few weeks she had left.
“For the year and a half of her illness, these people had become, in a way, a part of her family,” Donley-Hayes wrote. Ashley saw her doctors, nurses, and other hospital staff daily. However, Donley-Hayes added in the essay titled At Face Value, “when no more chemotherapy or radiation would be administered, they were gone. Looking back, I see this as a sad departure, almost an abandonment. They were there to help her try to live, but they were not there to help her die.
“This abrupt, confusing and sometimes hurtful division between treatment-oriented care and end-of-life care troubles Donley-Hayes still. She recalls no discussion between Ashley and the oncologist or nursing staff as to what to expect in her final phase of life, or how Ashley and her support team might handle it.”There’s a gap there in medicine,” Donley-Hayes says. “It seems like it should be more integrated, a better transition.”One advocate for a more blended transition from active treatment to palliative care says Ashley’s story is sadly familiar.”Clearly, this is not an unusual experience — it’s still far too common, it’s awful, and it shouldn’t be like this,” adds Dr. Karen Ogle, a professor of palliative medicine at Michigan State University.
Somewhere in the slow decline that can occur for patients who lose their battle against illness, Ogle says, medicine too often draws “this sharp line where the patient makes this abrupt transition to hospice.” A loved, trusted team makes its exit, and unfamiliar faces suddenly take over.
Ogle and others in the fast-growing field of palliative medicine are pushing for a much more shaded, gradual changing of the guard. Ideally, issues of quality of life and pain management should be discussed very early during the treatment process, Ogle says, and if a patient’s prognosis worsens, the search for a cure can slowly give way to a focus on palliative care.
Medical teams that patients leaned on during treatment can still be a vital part of this final stage of care, Ogle says. “In fact, I thought as I was reading this essay, of a recent, similar case that I was involved in — a 39-year-old woman with breast cancer whose oncologist was very actively involved, right up until the patient died in a hospice.”This type of more integrated palliative care is making inroads in medical centers across the country, she adds. One recent study found that more than half of all U.S. hospitals with more than 100 beds now have palliative-medicine services in place, and more than 2,000 physicians are now board-certified to practice palliative medicine. The American Board of Medical Specialties is also poised to award palliative medicine “official specialty” status, Ogle says.For her part, Donley-Hayes, a former paramedic and now a medical editor, agrees that traditional “treatment-focused” doctors and nurses have much to gain from helping patients through the dying process when living is no longer an option.”It’s a disservice to professionals in medicine to be removed from this part of a disease, because it’s part of it — and the most difficult part,” she says.Donley-Hayes stresses that she has no qualms with the “extraordinary” level of care Ashley’s medical team had given her as she struggled against breast cancer. But, after they left, she adds, “we just didn’t know where we stood, what to do or how to proceed. And if we felt that rudderless, what does the typical person who is ill, or their support network, feel? How do they deal with this?”
Resources are out there, of course — myriad books, organizations and Web sites aimed at guiding patients and loved ones through this final challenge.Ogle also urges patients to seek out hospitals that offer palliative-medicine services as part of their programs. And she says that those patients who can, should try to talk openly about the possibility of death — even as they fight their disease.”
Talking about that worst-case scenario early on actually gives you power,” she says.That’s a lesson Donley-Hayes says she learned from Ashley.”
She’s the real hero of this story,” Donley-Hayes adds. Clear-eyed, honest and able to laugh even on her last day, Ashley had an “undaunted openness about dying” that made helping her that much easier on her “posse,” her friend recalls.”Death isn’t like you see in the movies, you know — that’s not how it works,” Donley-Hayes adds. But Ashley’s life force met it head-on, she says.”That’s why I chose this title for the piece — to look at death at face value, and to take it for what it is.”
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