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How to talk about advance care planning with loved ones

Apr 16 2015
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One conversation can make all the difference.

Talking about advanced illness and preferences at the end of life can be difficult. Many people don’t want to think about a loved one facing declining health or death. Many others don’t know when or where to start the conversation. Sadly, if they haven’t planned ahead of time, individuals and their family members may not know what to do in the face of a serious accident or sudden death, or if someone is diagnosed with a terminal disease.

Fortunately, there are resources that can help individuals and families with this planning. Advance care planning can help everyone involved understand the choices and a person’s preferences, helping remove some stress and uncertainty. The Conversation Project helps families start this important conversation with a free on line starter kit.  The kit won’t answer every question, but it can help get the conversation started with family, friends and health care providers. (Aetna members have access to this kit and expert support via the Aetna Compassionate Care Program.)

National Healthcare Decisions Day (NHDD) also encourages families to start the conversation. The NHDD is a 50-state initiative committed to providing “clear, concise, and consistent information on healthcare decision-making” and helps to educate, empower, and inspire people about the importance of advance care planning.

Planning for end of life will likely involve not only medical, but also financial and often spiritual planning. Health care coverage and options, estate planning and legal requirements and forms are complex and depend on many variables, including the state where you reside.

Different types of care could be required with advanced illness. Consider the connection and tradeoffs of each:

Curative Care:

Curative care is what most people consider to be medical care provided by doctors, nurses, behavioral health and other health care providers. Curative care refers to treatment intended to alleviate symptoms of medical conditions, with the aim of a “cure” for the patient. The goals are to improve function, reduce pain, and help improve the quality of life for patients. Examples of treatment include medications, casts and splints for broken bones, prescription drugs, dialysis for kidney conditions, chemotherapy for cancer, and even medical equipment such as wheelchairs or ventilation machines.

Curative care is covered by the terms of commercial, Medicare and Medicaid health plans.

Palliative Care:

Palliative care is used to describe health care designed to give patients relief from the stress and symptoms of a serious illness. The aim of palliative care is to improve the quality of life for the patient and their family members. Palliative care focuses on issues such as pain, shortness of breath, fatigue, nausea, loss of appetite, difficulty sleeping and depression. It also helps patients gain the strength to carry on with their daily life.

Palliative care is provided most often to people suffering from chronic or advanced illnesses such as cancer, cardiac disease such as congestive heart failure, kidney failure, Alzheimer’s, Parkinson’s and Amyotrophic Lateral Sclerosis (ALS).

Palliative care is prescribed by a doctor and provided by doctors, nurses or other medical caregivers. It is most commonly received in an institution, such as an extended care facility, nursing home or hospital. Some palliative care, such as an occupational therapist or physical therapist’s session, can be provided in the home.

Palliative care can be received by patients at any stage of their illness while receiving curative or hospice care.

Custodial Care:

Many times with advanced illness, patients may not be able to perform the activities of daily life (such as bathing, eating, or dressing) without assistance. While this type of care is important and maintains quality of life, it does not need to be provided by a trained health care professional or to be prescribed by a doctor. As a result, this type of nonmedical assistance care is referred to as custodial care – whether provided at home or in a facility  – and is usually not covered by commercial health plans. Medicare and Medicaid plans, but do not cover custodial care if it is the only type of care required. Long-term care insurance, which is typically purchased separately from medical insurance, typically provides some coverage for custodial care (plans vary).

Hospice:

Hospice is also palliative care, but is focused on medical care to help maintain and improve quality of life for a patient whose illness, disease or condition is unlikely to be cured. A hospice patient usually has an individualized care plan that’s updated as needed to address the physical, emotional and spiritual pain that can accompany terminal illnesses.

Hospice care also offers support for the caregiver, or caregivers, during the illness and grief, and support after a death. With this support, hospice patients can concentrate on getting the most out of the time they have left.

In order to receive hospice services, a physician and a second physician must certify that the patient meets specific medical eligibility criteria; generally, the patient’s life expectancy is six months or less if the illness, disease or condition runs its typical course. Depending on the type of plan they have, some Aetna members are eligible for hospice much earlier, when their life expectancy is 12 months.

Typically, once enrolled through a referral, a patient’s hospice care program is administered in the home or hospice facility. This care is generally overseen by a team of hospice professionals.

Coverage for hospice care is typically provided through commercial, Medicare, and Medicaid plans. When hospice care is elected, curative care must be stopped for Medicare, Medicaid and many commercial health plan members. Aetna commercial members can continue both curative and hospice care with coverage for both.

For more information and resources, visit NHDD .