There comes a time when, despite your own and your family's wishes, beliefs or hope, death stares you in the face. A defining moment comes when you, as a family member, realize you are no longer prolonging a loved one's life but prolonging your loved one's dying process. I have learned that no one can tell you when that time is; it is a point that one must reach on their own.
The decision to let go is usually made after endless hours at your loved one's bedside and recognizing the pain and suffering your loved one has endured. I have watched countless doctors and nurses attempt to convey the need to make a decision to a family, but the advice is usually offered in vain. The timing is personal to every family.
Families can make various choices at the end of life. Different agencies can assist with the final days, depending upon the needs and wants of the patient and family. Most of the services can be provided in most any setting, such as a hospital, nursing home, assisted living facility or home environment. Hospice and palliative care are both available to provide end-of-life care. The major differences between the two involve the expected length of time until death and whether or not curative treatment is still being provided. In both cases, you can expect the services listed below. Typically, insurance will cover most or all of the services.
The word palliative is defined as "providing relief." Although there is a distinct difference between palliative and hospice care, there is also a relationship between the two. By definition, palliative care focuses on relieving symptoms and pain related to chronic illnesses such as cancer, cardiac disease, respiratory disease, kidney failure, Alzheimer's and other dementias, AIDS, Amyotrophic Lateral Sclerosis (ALS) and other neurological diseases.
Hospice provides relief and additional support when a cure is no longer an option. Palliative care for the dying is called hospice. Both provide whole-person and family support as well as symptom relief.
Hospice traveled to the United States from London, where the philosophy and principles (described below) were introduced in the 1970s. The approach gained acceptance, and Medicare began covering its costs in 1982.
Hospice is actually a philosophy involving a care plan, and sometimes even a facility, that provides comfort and support to terminally-ill patients and their families. Hospice acknowledges death as a natural occurrence and the inevitable conclusion of life. The goal of hospice is to provide pain control and comfort to the patient, which ultimately provides a better quality of life in the final stages of terminal illness.
Years ago, hospice was a place where dying patients went to die. Although this is still an option for those who require complicated care or who do not have family or friends who can assist, many patients opt for hospice care at home. Patients also receive hospice in nursing homes, residential facilities and acute care hospitals. Not surprisingly, with the growth of the elderly population, there has been a steady increase in hospice care provided in nursing homes over the last 15 years.
In order to be admitted to hospice care, the patient's physician must write an order indicating that treatment options for a specific illness have been exhausted, the patient's life expectancy is six months or less, and the time to focus on end-of-life care has come. Even with hospice, a patient may still receive medical treatment for any unrelated illnesses that are not strictly symptoms of the terminal illness.
The fundamental principle of hospice is holistic care. The whole person, including body, mind, and spirit, is treated. According to the National Hospice and Palliative Care Organization (2012), the basic tenets of hospice care include the following:
• Manage pain associated with the terminal illness
• Provide support for the emotional, spiritual and social needs of patients and families
• Help individual patients maintain dignity and some control over the manner in which they die
In addition, the interdisciplinary hospice team:
• Provides needed drugs, medical supplies and equipment
• Instructs the family on how to care for the patient
• Delivers special services like speech and physical therapy
• Makes short-term inpatient care available when pain or symptoms become too difficult to treat at home or the caregiver needs respite
• Provides bereavement care and counseling to surviving family and friends
Most patients receive care under one of the following four levels of hospice care:
Level 1: Routine Home Care
Patient receives hospice care at the place of residence.
Level 2: Continuous Home Care
Patient receives hospice care consisting primarily of licensed nursing care on a continuous basis at home.
Level 3: General Inpatient Care
Patient receives general inpatient care in an inpatient facility for pain control or acute or complex symptom management that cannot be managed in other settings.
Level 4: Inpatient Respite Care
Patient receives care in an approved facility on a short-term basis in order to provide respite for the caregiver.
Major Differences in Palliative vs. Hospice Care
• Palliative care can be used at any stage of illness -- not just the advanced stages. Treatments are not limited with palliative care and can range from conservative to aggressive/curative.
• Hospice treatment is limited and its focus is on relief of symptoms. The goal is no longer to cure, but to promote comfort.
• Palliative care can be considered at any time during the course of a chronic illness.
• With hospice care, Medicare requires that a physician certify a patient's condition as terminal. The physician must certify that a patient's life expectancy is six months or less. While a physician referral is needed for palliative care, the patient does not need to be declared terminal; there can still be hope for a cure.
• Both palliative and hospice care can be delivered at any location.
• Palliative care includes specialists, non-physician clinicians, social workers, chaplains, pharmacists, and nutritionists.
• Hospice care includes physician services, nursing services, social workers, spiritual care, bereavement care, and volunteers.
Because of the increasingly older population in the United States and the chronic diseases that often plague this group, palliative care is a rapidly growing field. Many specialists -- such as cardiologists, pulmonologists or nephrologists -- and other doctors who care for patients with chronic diseases are familiar with providing a referral for these services. Have a conversation with your doctor to discuss the options.
Regardless of the path that you choose for yourself or your loved one in the final days, you will never know "how long it will actually take until death comes." Predicting the time of death is even more difficult than predicting the time of birth. Professionals can make an educated guess, but at the end of the day, it is an educated guess and nothing more. Savor every moment until that time comes.