Curative, Palliative and Hospice Care:Definitions and Differences

By Tom Smith, Ph.D.

 

An integrated model of care for the ill includes curative care, which is disease-specific and restorative in principle; palliative care, which is symptom oriented and supportive in nature and finally hospice care, which is an extension of palliative care that focuses on preparing at all levels, physical, social, emotional, spiritual and economic for death. All three approaches to care are a philosophy of care and an organized, structured, practical system for delivering care.

No one wants to hear that they have a disease of any kind let alone a life-threatening, chronic, debilitating or terminal illness. But, it is a frequent pronouncement to most people of all ages: Heart disease, cancer of all types, idiopathic pulmonary fibrosis, methicillin resistant staphylococcus aureus (MRSA), multi-resistant tuberculosis, grave infection, HIV/AIDS, stroke, pneumonia, renal or liver failure, and on and on. Our next question might be, “Is there a cure?”, or “Is it treatable?” If the answer is “yes”, we pursue a course of restorative care; we attempt to get our health back. Even if we cannot become healthy again and are unlikely to recover, we then look to halting the disease or keeping it under control, much like what is done today with HIV/AIDS.

As curative care becomes less effective, it begins to merge into palliative care. If curative care is not available, palliative care is begun immediately. Palliative care includes not only the person with the illness, but also, the family, caregivers and in many cases, friends, especially if the person is single or has no family. Dignity, peace and comfort for first of all, the patient, as well as the family, are paramount to quality palliative care.

Patient populations of all ages are included in palliative care and all types of families and relations are considered. No person because of inability to communicate, race, ethnicity, sexual orientation or ability to pay should be denied palliative care. Each person is unique and each social group they belong to is unique. There may be the traditional family of blood relatives, but also, non-traditional families of same-sexed relationships, unmarried heterosexuals or neighbors and friends who are the virtual family of the dying person.

Palliative care focuses on a multiplicity of concerns: Physical, psychosocial, psychiatric, spiritual, religious and existential aspects, cultural frameworks, ethical and legal concerns and the practical goals and hopes of the patient and family. The importance of each of these facets of palliative care should be continually revised as the situation changes. For example, at first, physical needs, relief of suffering and comfort is of primary importance; later, near the end of life, spiritual and existential issues come to the forefront, but not at the expense of any other type of care.

An interdisciplinary, collaborative team is created: Doctor, home health aides, certified nursing assistants, visiting nurse, social workers, counselors, clergy and family caregivers. All engage in truth telling and are available to provide education, support and coordination of care for realistic decision-making. Effective verbal and written communication skills are needed to properly bring the core elements of care together; this includes active listening to meet the unique needs of the individual and family.

Palliative care begins with an accurate assessment of the person’s support system, life goals, needs and preferences early on in the disease process. There must be an honest, open appraisal of the stage of the disease in order to set appropriate goals. This can be a wrenching experience, especially if the family is not ready to face the reality of the situation. Think of a mother in her 40s or 50s with advanced, inoperable colon cancer. The family may want “to try anything” before facing the inevitable. They may leave the country for unorthodox treatments or worse be vulnerable to quack cures. This may prolong the suffering of the patient and the family. Gentle and firm counseling and guidance can be very helpful in preventing such a course of action.

Once the appraisal process has begun, it must be reviewed as the disease progresses, especially if there are quickly developing symptoms. There must be an anticipation of side effects of medication and education that involves advanced care planning. As the prognosis shortens, there may be a reduction of medications and the consequent alleviation of side effects for improved quality of life. When visits to the doctor become burdensome or unproductive, it is time to go home for extended palliative care or hospice care. It is crucial that there be an ongoing discussion of the patient’s prognosis with the patient, family and significant others. It is not unheard of to see spontaneous remissions of disease or an unexplained improvement in health. and a movement from focused hospice care back to palliative care.

A central concern of palliative care emphasizes aggressive prevention, remediation and control of bothersome symptoms. These symptoms include, but are not limited to first of all, PAIN, also nausea, anorexia, fatigue, weakness, insomnia, anxiety, depression, confusion, dementia, bowel or bladder problems and functional capacity. The patient does not need to suffer any physical or emotional distress or pain. The patient should be asked about their comfort level regularly and the patient and family are to be believed. If they say they are in pain, they are in pain! Appropriate treatment options are chosen that may extend from aspirin to morphine, sedatives and antidepressants. The situation should be evaluated frequently and the patient and family empowered to control pain and discomfort. The trajectory of the disease drives what drugs are needed and/or changes in environment and total living situation. The person is to live with as much quality of life and comfort as possible unto death.

Sooner or later, weeks or months, palliative care merges seamlessly into hospice care. Hospice care is commonly considered to be initiated when there is only six months left to live. Hospice is not only a philosophy of caring for the dying, but also a practical method of delivering care during the dying process. So, hospice can be at home or a place other than home, a hospice.

Making the change from palliative to hospice care can cause great distress to the dying person and/or the family because it acknowledges that protracted palliative care is not appropriate and that death is the expected outcome. Hospice is the extension of palliative care and not a cessation.

Most people, if they have the opportunity, usually express that they would like to die at home. Unfortunately, sometimes this is not feasible or possible. There may be no family or friends to care for the patient. The level of care required may be beyond the expertise of relatives or properly educated, trained and supervised volunteers. There may not be the financial resources to hire a qualified, certified caretaker. Under these circumstances, hospice becomes a place one goes to die. If this is the case, it is important that there be a plan already in place for continuity of care from home to a skilled nursing facility or other institutional setting.

As the end of life approaches and death is imminent, all unnecessary medications are eliminated; however any pain and suffering is to be treated aggressively. Legal issues are to be addressed before death. Ethical and cultural aspects of the patient’s and family’s values are acknowledged and respected; for example, a priest may be called in the case of a Catholic family or in the state of Oregon, a physician may be called in to hasten death with assisted suicide. Death is to be recognized as an inevitable part of life and anticipatory grief is begun. Hospice care, which is concerned with the dying, transitions into palliative care after death with the care and support of surviving, grieving and bereaved family and friends.

References

Clinical Practice Guidelines for Quality Palliative Care, 2004. A publication of the National Consensus Project for Quality Palliative Care, One Penn Center West, Suite 229, Pittsburgh, PA, 15276

A Guide To Primary Care For People With HIV/AIDS, 2004 edition. http://hab.hrsa.gov/deliverhivaidscare/files/primary2004ed.pdf