Decisions About End-of-Life Care

Nursing home is a generic term used to describe a facility that provides care, but actually there are various types of nursing home accommodations available to care for a patient depending on their needs. Here’s an overview of the main types:

• Skilled nursing facilities: Provide 24/7 medical care for seniors with serious health conditions or post-hospital recovery needs. They offer skilled nursing, physical therapy, and assistance with daily activities and are best for those requiring intensive medical support.
• Assisted living facilities: Focus on seniors who need help with daily tasks (e.g., bathing, dressing, meals) but don’t require constant medical care. Emphasize independence with social activities and some medical oversight.
• Memory care facilities: Specialized for seniors with Alzheimer’s or dementia. They offer secure environments, structured routines, and staff trained in memory-related care to manage cognitive decline.
• Continuing care retirement communities: Combine independent living, assisted living, and nursing home care on one campus. Residents can transition between levels of care as needs change. They’re ideal for long-term planning.
• Board and care homes: These are smaller residential settings offering personalized care and a homelike environment. They provide assistance with daily activities and some medical support. They are suited for those preferring a less institutional feel.
• Rehabilitation centers: These are short-term facilities focused on recovery after surgery, injury, or illness.  They offer intensive therapy (such as physical, occupational, and speech) to help seniors regain independence.

Each level of care varies in cost, care needed, and environment, so the choice will depend on the patient’s health, budget, needs, and preferences.

Hospice care is another type of care that may be familiar to many people. Hospice care focuses on providing comfort and support to individuals with terminal illnesses who are nearing the end of life, typically with a prognosis of six months or less to live. It emphasizes keeping the patient comfortable instead of curing the illness and often includes addressing physical, emotional, and spiritual needs to prepare for dying. Hospice care can be provided in various settings, including:

• Home: The most common setting, with care from hospice professionals and family support.
• Nursing homes: This is for residents already in long-term care facilities.
• Hospice facilities: These are dedicated centers for end-of-life care.
• Hospitals: Used when patients need short-term symptom management.

Hospice services include:

• Pain and symptom management (palliative care).
• Emotional and psychological support for patients and families.
• Assistance with daily activities (e.g., bathing, dressing).
• Spiritual counseling, if desired.
• Bereavement support for families after the patient’s death.

For elderly individuals in nursing homes, hospice care can be integrated into their existing care plan. Many nursing homes partner with hospice providers to deliver services on-site, allowing residents to stay in familiar surroundings. Long-term care insurance may cover some hospice costs if included in the policy, but Medicare typically takes precedence for eligible patients.

Hospice care is delivered by a team of professionals, including doctors, nurses, social workers, chaplains, and volunteers. To qualify for hospice care, particularly under Medicare or most insurance plans in the U.S., specific criteria must be met:

• Terminal illness diagnosis: A physician must certify that the patient has a life expectancy of six months or less if the illness runs its expected course. This prognosis is based on the patient’s medical condition and decline trajectory. Common qualifying conditions include advanced cancer, heart failure, COPD, Alzheimer’s or dementia, kidney failure, or ALS.
• Certification by physicians: Two physicians (typically the patient’s primary doctor and a hospice medical director) must confirm the terminal prognosis.
• The certification must be documented, and recertification is required if the patient lives beyond six months.
• Acceptance of palliative care: The patient must agree to forgo curative treatments (e.g., chemotherapy for cancer) in favor of comfort-focused care. This means stopping treatments aimed at curing the illness though treatments for symptom relief (e.g., pain medication) are continued.

Patients can revoke hospice care to resume curative treatment or for other reasons, then re-enroll if needed. Hospice is not limited to the elderly; anyone with a qualifying terminal illness can enroll.

Choosing a reputable, licensed hospice provider is important. Medicare’s website (medicare.gov) or state health departments can list approved providers. The patient or family has the right to interview hospice agencies and choose one they feel aligns with their values and priorities for the patient. Families often delay seeking hospice care due to the emotional difficulty associated with accepting a terminal prognosis. Hospice does offer counseling and education for families, which can be helpful especially if the family is not coping well.

A point may come in the treatment process for a patient, when a discussion needs to occur about ending a specific treatment plan. This can occur for several reasons, such as when the medical intervention is no longer effective in treating the illness, when the treatment becomes overly burdensome for the patient, or when it prevents the patient from achieving their end-of-life goals.  Stopping a specific treatment may cause natural death to occur sooner than if treatment had continued, such as with dialysis.

Withdrawing care should only occur in rare circumstances and the only people who can make the decision is the patient or their power of attorney for healthcare and the decision should align with the patient’s end-of-life wishes. How care is withdrawn is important and should NOT employ the following three methods.

Futile care is similar but distinctly different in that the decision to stop treatment is made by the medical team and the family may or may not be consulted. Typically, it is a doctor or hospitalist who judges the treatment as “futile” and believes it is wasting resources or giving the patient false hope of recovery. Defining futility is complex and can be controversial because patients, their families, and the healthcare provider may disagree on what is or isn’t beneficial for the patient. 

Choosing to end or withhold treatment should never include stopping food or fluids, unless death is imminent or the patient is choosing not to eat or drink. If the patient is being fed through a feeding tube, withdrawal of the feeding tube will lead to dehydration or starvation and death. Once a feeding tube is in place, it should remain to ensure the patient can receive nutrition and hydration.

Voluntarily stopping eating and drinking (VSED) is a specific form of withdrawing care (stopping food and fluids), but it is patient-initiated and focused on hastening death, whereas withdrawal of care broadly includes stopping all life-sustaining treatment (e.g., ventilators) for comfort or futility reasons. While VSED respects autonomy, some argue it can feel coercive if driven by lack of other options to access care. VSED is a form of starvation that causes dehydration and is physically very painful to endure.

Terminal sedation can accompany withdrawal of care and if used aggressively, will hasten the dying process. Terminal sedation places a patient under anesthesia during the dying process. Supportive care is stopped, and the patient is given a sufficient number of drugs to render them unconscious.

An article titled “A Declaration on Assisted Dying” authored at the 13th International Conference of the World Federation of Right to Die Societies in 2000, describes the practice of terminal sedation as something done regularly throughout the world in hospitals, nursing homes, hospices, and in private homes. It is carried out under the doctrine known as double effect by which a physician may lawfully administer increasing dosages of regular analgesic and sedative drugs that can hasten someone’s death as long as the declared intention is to ease pain and suffering. 

Their double-effect doctrine is discussed in-depth in the article “Stealth Euthanasia.” To prevent a loved one from becoming a victim of it, the POA can work with the medical staff to identify the lowest dose of sedation that prevents discomfort but doesn’t cause an unconscious state.  

When the patient is put into a state of unconsciousness, the dying person is deprived of being present at the end of their own life; it undermines their humanity and personhood. It can also deny family members the opportunity to have time with the dying person.

According to the Hospice Patients Alliance, terminal sedation is becoming more and more common in hospice situations and is used in effect as a means of slow euthanasia where the family and/or healthcare professionals are not willing to openly admit they are choosing to end the life of the patient. It is often done routinely without the patient’s knowledge or permission, and outwardly it appears as a peaceful death. 

Complete sedation of a patient is appropriate only when the patient is already actively dying and severely agitated, is in a delirious state, or when sedation combined with pain medication is being used to manage extreme uncontrolled pain. Sedating the patient in these rare circumstances manages the symptoms but does not cause death as terminal sedation does.

Comfort care focuses on keeping the patient comfortable when the decision is made to stop seeking to cure an illness. A cancer patient may decide to stop chemotherapy or radiation because it has become too burdensome or is no longer effective in preventing the cancer from advancing. 

Palliative care would then be employed to help manage pain using various pain medications to keep the patient comfortable and pain free. 

Palliative care is for people of any age and at any stage in an illness, whether that illness is curable, chronic, or life-threatening. Palliative care is in essence about pain and symptom management. It has become a specialized field of medicine and should be included in caring for every patient that is experiencing any level of discomfort, regardless of age or status of health.

When medical professionals use either of these terms, it is critical to ask for clarification to ensure the family and patient understand what type of care is being referred to in the discussion.