What is Hospice?

• Hospice providers care for individuals who have a life-limiting illness and are no longer seeking treatment for a cure.
• Hospice is not a place; it is a type of high-quality care that provides for the medical, emotional and spiritual care of persons and their family.
• Hospice provides a special kind of caring through the work of the interdisciplinary team, some of whom are: Nurses, Social Workers, Chaplains, Doctors, Hospice Aides, Volunteers, and Bereavement Coordinators. A person may keep their own physician involved while on Hospice.
• Hospice provides comfort measures including management of physical symptoms (i.e. pain, nausea, anxiety, etc) and assistance with personal care if needed.
• Hospice assists people and their family members with ongoing counseling and spiritual support, including grief support related to loss.
• Hospice provides medications, medical supplies, and equipment as needed for comfort measures.
• Hospice staff provides education to the family on how to keep their loved one comfortable.
• Hospice can provide speech and physical therapy and dietician services when needed.

Who benefits from Hospice?

• Anyone facing a life-limiting illness, regardless of age or illness;
• Hospice serves people of all backgrounds, cultures and traditions; the hospice will provide care and assist with respect for a person’s values, religious needs, and any other individual desires for end of life.
• Families benefit from bereavement and grief support after the loss of their loved one.

Where does Hospice provide care?

• Hospice serves persons in their home, in assisted livings, in nursing homes, and, when needed, in hospitals.

When is the right time for Hospice Care?

• Hospice can provided the most benefit to people who begin services as early as possible; when it is determined that aggressive treatments are no longer beneficial.
• People elect hospice so that they can live out their life in the place and manner of their choice.
• A goal of Hospice is to help people accept death as a natural part of life; Hospice seeks neither to hasten nor prolong the dying process. The Hospice philosophy is that people matter even to the last minute of life.
• The person on Hospice and their family remain in control and direct their care with the aid of the Hospice Interdisciplinary Group.

How is Hospice paid for?

• Medicare and Medicaid beneficiaries pay little or nothing for Hospice services; most private insurances also include Hospice coverage.

How to contact a Hospice?

• Like all Healthcare providers there is more than one Hospice. Contact you health care provided for a list of Hospices in your area. It is encouraged that you interview several Hospices.More information about Hospice at: http://www.ehospice.com/usa/en-gb/categories/educationforconsumers.aspx

The Interdisciplinary Group provides for the physical, psychosocial, spiritual, and emotional needs of a terminally ill person and/or their family members, based on individual assessment, goals and plan of care. You may have any of the following involved in your Hospice care:

Physicians: Two physicians generally are involved in your care.
Attending Physician: You will be asked to choose a Doctor when you elect to receive hospice care, as your primary physician; that physician has the most significant role in the determination and delivery of the individual’s medical care. You can choose one of your personal doctors to be in this role.

Medical Director: The Hospice will also have a Medical Director who is educated in areas specific to Hospice (i.e. pain, nausea, comfort measures). This physician will be aware of your situation via report from the rest of the team as well as by reviewing records. They will assist in your care and, at times, visit persons to ensure the hospice team is providing optimal care. The Hospice Medical Director will talk with your physician as needed.

Nurses: RNs and LPNs who are trained in pain and symptom management and end-of-life issues. You will usually be assigned one primary RN case manager who will do most nursing visits and manage your needs. Nurses are available “on-call” during evening and weekend hours.

Social Workers: Licensed Social Workers assist with emotional concerns, address issues causing stress and have information on additional community resources when needed.

Chaplains: Persons trained in a variety of Faiths and Religions are available to address your spiritual needs, provide spiritual comfort and counseling; they can also assist with contacting community clergy if needed/ requested.

Hospice Aides/ Certified Home Health Aides (as needed in NJ): Hospice Aides are assigned on an individualized basis when an RN case manager determines that there is need for this personal care. Hospice strives to allow you to be independent and cared for by loved ones; when additional help is needed the Hospice Aide will assist with bathing, personal hygiene, the person’s personal needs and personal space. They also assist in educating your loved ones on how to provide care while maintaining your dignity, privacy and safety.

Hospice Volunteer Coordinator and Volunteers: These are specially trained persons who will support persons and families as friendly visitors and family support as needed/ requested.

Bereavement Coordinator and counseling: Hospices provide ongoing support to you and your family specific to issues related to grief, loss, and mourning. The Bereavement Coordinator ensures these needs are addressed while you are on Hospice and after.

Dietary Counseling, Alternative Care/ Therapies (Physical/ Speech/ Music/ Pet- The Hospice Interdisciplinary Group works with counselors and therapists to provide comfort to the person. When this is required the Hospice will work with the person and family to find the appropriate Provider to address the identified need.

Hospice is highly individualized care – based on your needs and desires. Any services by Hospice are coordinated with your input and as needed by you.

Most peoples’ understanding of Cardio Pulmonary Resuscitation or CPR is based on what they have seen on television or at the movies. A person collapses from a heart attack and a crash cart, led by doctors and nurses, comes rushing down the hall to bring the victim back to life.

This popular image has led many people to believe that CPR is used to save someone from dying, or to bring a person who has died back to life. This is not a completely accurate picture of CPR.

WHAT IS CPR?

CPR is an emergency method of life saving under certain limited circumstances, usually an event which causes the heart to stop beating in a person who otherwise has normally working organs such as the heart, kidneys, liver and brain.

If these organs are significantly damaged, the body cannot sustain itself and the heart stoppage is usually a result of the deterioration of the body in general.

CPR involves artificial respiration (breathing into the person’s mouth) and external heart massage, usually after a sudden event such as a cardiac arrest, drowning or high voltage electric shock in a body that is otherwise reasonably healthy. No matter what the cause, if the heart is stopped for too long permanent brain damage or death will occur.

HOW EFFECTIVE IS CPR?        

CPR’s effectiveness depends on the previous health of the person, the cause of the heart stoppage and the speed with which CPR can be administered. CPR is most effective if begun within a few minutes after a cardiac arrest and if there is follow-up care in a hospital intensive care unit. It is most successful when the victim is a reasonably healthy person who has had a sudden loss of normal heart function. In these situations, attempting CPR may be very worthwhile, with a survival rate ranging from 10 to 40 percent.

WHAT IS THE ROLE OF CPR IN A LONG-TERM CARE SETTING?

People who become patients and residents in long term care settings such as nursing homes, homes for aged and chronic care hospitals usually have many chronic health problems affecting many organs of the body including the heart, kidneys, liver and brain. Research and experience have shown that CPR is unlikely to have a positive outcome for most of these individuals, especially when they are also very elderly. When someone with many chronic health problems has a cardiac arrest, it is not an isolated event nor is it likely to be reversible. The cardiac arrest is usually part of a complex process. Many parts of the body are already affected by disease and a cardiac arrest is often the final step in a progressive and complex process of deterioration leading to death.

WHAT ARE THE CHANCES OF SURVIVING CARDIAC ARREST?

The odds of long term care residents and in-patients surviving a cardiac arrest are slight. Even under the best circumstances with the least compromised individuals, only 2 to 3 percent whose hearts stop suddenly survive after receiving CPR.   If there are pre-existing medical conditions, studies have shown that the likelihood of surviving CPR for those individuals is closer to zero.

WHY NOT TRY CPR ANYWAY?

If CPR were a simple, painless and dignified procedure that was readily available, there would be no reason to recommend against using it in the long term care setting. However, CPR requires intense treatment by doctors, nurses and other staff members, and the procedure itself may cause painful damage to the chest wall, ribs and internal organs.

CPR involves placing a person on a hard surface, either on a board if in bed or directly on the floor, pumping the chest vigorously and forcefully and at the same time breathing for the person. A breathing tube may be inserted into the windpipe and oxygen delivered to assist in breathing. In many cases, an intravenous line must be quickly inserted to deliver medications, and it is often necessary to apply a number of electrical shocks to the heart through paddles placed on the chest.

Some people residing in long term care settings respond at first to the CPR treatment. It is then usually necessary to transfer them to an intensive care unit at an acute care hospital to be maintained on a respirator. However, the vast majority of people who survive at first in these circumstances die within a few hours or days.

WHAT IS A DNR ORDER?

A DNR order will protect the person from unnecessary attempts at CPR which will offer virtually no medical benefit. When a person has agreed to a DNR order, this order is written into the health care record (the chart) by the physician. It tells the medical and nursing staff that, in the event of disorder affecting the heart such as a heart attack or other cause of cardiac arrest, certain resuscitative procedures are not to be started.

A DNR order applies only to the process of CPR and not to any other medical treatments. All other treatments can be considered and decisions about them will be made as usual, based on the person’s needs and interests and potential benefits.

References

1. Applebaum GE, King JE, Finuccane TE. The outcome of CPR initiated in nursing homes. J AM Geriatr Soc 1990; 38(3): 197-200.
2. Awoke S, Mouton CP, Parrott M. Outcomes of skilled cardiopulmonary resuscitation in a long-term care facility: Futile therapy? J Am Geriart Soc 1992; 40(6):593-595.
3. Finucane TE, Leal-Mora D. From Jezebel to a dead man walking: Attempting resuscitation in long-term care. J Am Geratr Soc 1997; 45(2): 245-246.
4. Gordon M. Should we provide cardiopulmonary resuscitation to elderly patients in long-term care? Cardiology in the Elderly 1995; 3:53-57.
5. Gordon M, Cheung M. Poor outcome of on-site CPR in a multi-level geriatric facility: Three and a half years experience at the Baycrest Centre for Geriatric Care. J Am Geriatr Soc 1993; 41(2): 163-166.
6. Zweig Cardiopulmonary resuscitation and do-not-resuscitate orders in the nursing home. Arch Fam Med 1997; 6(5): 424-429.
7. Zweig An alternate policy for CPR in nursing homes. Bioethics Forum 1998: 14(1): 5-11.
8. Levin JR, Wenger NS, Ouslander JG, et al. Life-sustaining treatment decisions for nursing home residents: Who discusses, who decideds and what is decided? J Am Geriatr So 1999; 47(1): 82-87.
9. Shiedemayer DL. The decision to forego CPR in the elderly patient. JAMA 1988; 260(14): 2096-2097.
10. Weil MH, Wiel CJ. How to respond to family demands for futile life support and cardiopulmonary resuscitation. Crit Care Med 2000; 28(9): 3339-3340.
11. Stein RS, Brody H, Tomlins T, et al. CPR not-indicated and futility. Ann Intern Med 1996; 124(1): 75-77.
12. Tomlinson T, Brady H. Futility and the ethics of resuscitation. JAMA 1990; 264(10) 1276-1280.
13. Gordon M. In long-term care, the “R” in CPR is not for resuscitation. Annals of the Royal College of Physicians and Surgeons of Canada 2001; 34:441-443.
14. Marco CA, Schears RM. Societal opinions regarding CPR. AM J Emerg Med 2002; 20(3): 207-211.
15. Ebell MH, Becker IA, Barry HC, Hagen M. Survival after in-hospital cardiopulmonary resuscitation, a meta-analysis. J Gen Intern Med 1998; 13(12): 805-816.
16. Bendendorf R, Swor RA, Jackson R, et al. Outcomes of cardiac arrest in the nursing home: Destiny or futility? Prehosp Emerg Care 1997; 1(2): 68-72.
17. Weijer C, Singer PA, Dickens BM, Workman S. Dealing with demands for “inappropriate” treatment: Medical futility and other approaches. In: Singer PA, ed. Bioethics of the Bedside: A Clinician’s Guide. Ottawa Canada: Canadian Medical Association; 1999.
18. Gordon M, Schwartz BE. Do-Not-Resuscitate practice, guidelines and policies in long-term care in Ontario: Results of a survey. Annals of the Royal College of Physicians and Surgeons of Canada 1996; 29:332 -335.
19. Choudhry NK, Ma J, Rasooly I, Singer PA. Long-term care facility policies on life-sustaining treatments and advance directives in Canada. J Am Geriatr Soc 1994; 42(11): 1150-1153.
20. Ditillo BA. Should there be a choice for cardiopulmonary resuscitation when death is expected? Revisiting an old idea whose time is yet to come. J Palliat Med 2002; 5(1): 107-116.
21. Weijer C. Cardiopulmonary resuscitation for patients in a persistent vegetative state: Futile or acceptable? CMAJ 1998; 158(4): 591-493.
22. Diem SJ, Lantso JD, Tulsky JA. Cardiopulmonary resuscitation on television. Miracles and misinformation. N Engl J Med 1996; 334(24): 1578-1582.

Myth:              Fluids, tube feeding and TPN save lives and can help all patients recover from illness.

Truth:             While these methods of nutrition save lives and play a major role in recovery from surgery and protect patients against the transient and toxic effects of cancer treatment, these benefits are not demonstrated in the terminally ill patients.

Myth:              Dehydration and starvation lead to a very painful and unpleasant death.

Truth:             While dehydration and starvation can be painful ways to die for otherwise healthy individuals, studies have shown that terminally ill patients do not suffer when nutrition and hydration are withdrawn. In fact, it is hypothesized that advanced stages of dehydration may lead to the release of a compound from the brain which causes an analgesic effect. Ketones produced during starvation also produce an analgesic effect.

Myth:              There are no benefits to dehydration.

Truth:             Dehydration allows for a series of physiologic changes which actually allow for increased comfort in a terminally ill patient. A decrease in urine output results in less need for a bedpan, commode or catheterization and fewer bed-wetting episodes. A decrease in gastrointestinal fluid leads to fewer bouts of vomiting. A decrease in pulmonary secretions leads to less coughing, choking and need for suctioning. Reducing the edematous layer surrounding a tumor diminishes the size of a tumor and reduces the associated pain and symptoms caused by the tumor. Reducing fluids leads to a decrease in painful ascites as well as fluid third spacing and general edema. Dehydration also allows for a decrease in wound and fistula drainage.

Myth:              Dehydrated patients feel thirst.

Truth:             Studies have proved that dehydrated patients do not feel thirst. As long as the patient’s mouth is kept moist, he or she will not feel thirsty or uncomfortable.

Myth:              Artificial hydration allows the patient to live longer and spend more quality time with loved ones.

Truth:             Studies have proved that dehydrating a patient does not shorten their life. Sustaining artificial fluids and nutrition requires intravenous lines, wires and pumps and sometimes restrain the patient so that he or she does not pull the lines out. These high-tech devices can be a barrier between the patient and the family and can take away from the closeness between patient and family at the time of death.

Myth:              Hydration will increase alertness and comfort at end-of-life.

Truth:             While hydration may increase alertness, it decreases the amount of natural analgesics which are released in the blood. This will not only take away from the body’s natural analgesic effect but will make the patient more aware of the pain. Studies have revealed dehydrated patients are often more comfortable than those who are hydrated.

Myth:              Dehydrating a terminally ill patient causes abnormalities in blood chemistries and related symptoms.

Truth:             Researchers have found surprisingly normal blood levels in dehydrated terminally ill patients.

Myth:              Starvation is inhumane and a form of punishment.

Truth:             Our society traditionally views food and drink as a symbol of love, nurturing and caring. Food and drink are symbolic and a part of most cultural rituals. Providing food to those who are unable to feed themselves is often viewed as an act of nurturing, and taking food away is viewed as a form of depersonalization. In contrast, the withholding of these traditional symbols has been viewed as punishment reserved for social outcasts and misfits. It is for these reasons that it is so difficult for some families to withdraw nutrition. However, artificial nutrition and hydration are not the “normal” way of eating, it is the medical way and families often see it as antisocial. Withdrawing of nutrition and hydration is not punishment but a humane intervention since it has been shown to produce analgesic effects on the patient.

Myth:              Withdrawal of nutrition and hydration is a form of euthanasia.

Truth:             Withdrawal of nutrition and hydration is not euthanasia. Artificial nutrition and hydration are considered medical treatments. Patient and families have the right to refuse these treatments and it is not considered murder or suicide. It is the underlying disease that will kill the patient, not the withdrawal of artificial nutrition and hydration.

Myth:              Once artificial nutrition/hydration is started it cannot be stopped.

Truth:             This statement is false. Stopping these treatments is both legally and ethically acceptable. The law requires that the treatment be terminated if the patient does not want it.

Myth:              The health care provider has the right to make decisions regarding withholding/withdrawing hydration and nutrition.

Truth:             If individuals have made their wishes known, the health care provider must honor these wishes. If he or she is uncomfortable with the situation, care can be transferred to another provider who will respect the patient’s decision.

Myth:              Once the nutrition/hydration are withdrawn or withheld, the patient will be abandoned by the health care team.

Truth: Withdrawal of nutrition/hydration is not synonymous with withdrawal of treatment. Patients still require symptom management and daily care to assure a comfortable death. This care can and should be provided regardless of nutrition and hydration status. It is considered unethical and unprofessional as well as illegal to neglect of abandon a patient.