Advance Care Planning
Advance care planning is important for patients, family members, caregivers, aging services professionals, and healthcare providers. It allows a person to make known their wishes regarding treatment and care in the event of a serious illness or a situation in which they lose decision making capacity (CDC, 2015b).
Advance care planning includes both having an up-to-date plan for ongoing daily care and making and documenting a body of decisions regarding end-of-life treatment wishes (CDC, 2017e). These documents are generally referred to as advance directives and they include living wills and durable powers of attorney for either medical or financial decisions, as well as specific orders such as DNR, DNI, and statements regarding artificial nutrition and hydration (NHPCO, 2016). Related documents called POLST (POST, MOLST, MOST) orders work in conjunction with advance directives (Morrow, 2018; NPP, 2019).
Engaging in advance care planning allows a person to investigate available life-sustaining treatments and to decide which ones they would or would not want. It allows them to express their values and wishes, relieves others from having to guess or agonize over a decision when the person can no longer speak for themselves, and avoids the possibility of unwanted medical treatments being undertaken (NHPCO, 2017; CDC, 2015b).
Source: National Healthcare Decisions Day website, www.nhdd.org.
Advance directives for healthcare are legal documents that allow a person to let others know ahead of time what medical care they want. They should be completed when a person is healthy. Doing so gives a person control over their healthcare and advance planning can relieve worry that one’s wishes might not be followed or that an undue burden will fall on family members. It also allows family members and caregivers the peace of mind of knowing a person’s specific wishes. Advance planning means that in already stressful circumstances, such as a cancer diagnosis or an end-of-life situation, time does not have to be spent trying to figure out the most basic decisions.
Conversations about end-of-life planning are often difficult, for individuals, families, and even for healthcare providers. Most healthcare facilities have relevant forms and someone who can assist with them, and most will retain completed forms in a patient’s file. It is also advisable to keep copies handy at home and to carry a wallet card that lets others know the documents exist and where they are stored.
In 2017 Medicare began allowing physicians and non-physician practitioners to bill for providing advance care planning (ACP) services to their patients (CMS, 2018; NCI, 2015), and the CDC provides an online course with many resources to help healthcare and aging services professionals provide these services (CDC, 2015b).
Advance directives can always be changed if a person’s wishes change, and it is advisable to review these documents from time to time. Each state has its own laws regarding advance directives and states do not necessarily observe reciprocity, so a person should be sure that they have completed the appropriate document for the state where they live and are being treated.
A living will allows a person to state whether or not they want specific types of medical care in a situation where they cannot speak for themselves. The most common types of care addressed are:
- Use of machines to sustain life (ie, dialysis machine or ventilator)
- “Do Not Resuscitate” (DNR) orders (instruct healthcare team not to use CPR if breathing or heartbeat stop)
- Tube feeding
- Withholding of food and fluids
- Organ and tissue donation
A medical power of attorney allows people to name another person to make decisions about their medical care if they are unable to do so. This document may also be referred to as a healthcare proxy or a durable power of attorney for healthcare and the person appointed is the healthcare agent, surrogate, or proxy. These documents do not state specific actions to be taken in specific medical situations but designate another person to make those decisions for the patient.
A person may also want to appoint someone to manage their financial affairs if they cannot. This is called a durable power of attorney for finances, and is a separate legal document from the durable power of attorney for healthcare. The proxy chosen does not have to be the same on both.
A Do Not Resuscitate (DNR) order is a document that directs medical staff in the hospital not to do cardiopulmonary resuscitation (CPR) if the heart or breathing stop. A DNR order is only about CPR and not about any other treatment, and in the United States if there is no DNR order then CPR will be performed regardless. There is also an Out-of-hospital DNR order that tells emergency medical workers outside of a hospital that CPR is not wanted. The details of these orders vary from state to state. A DNR can be part of an advance directive (living will) or can be a single specific order a patient asks a doctor to put in their medical chart.
Do Not Intubate (DNI) orders allow a patient to request that they not have a tube placed into their nose or mouth to facilitate breathing. It is a treatment specific order and does not prevent other techniques of resuscitation. Patient and physician need to discuss the details involved and how DNR and DNI orders may be connected.
Other individual orders may concern artificial nutrition and hydration—treatments that provide a person with food and fluid when they can no longer take them by mouth (NIA, 2018a; NHPCO, 2016, 2015b; NCI, 2015a).
There are other forms that work in conjunction with advance directives. While everyone should have an advance directive (living will, healthcare power of attorney) not everyone needs a POLST or POLST-type document.
POLST stands for Physician Orders for Life-Sustaining Treatment. POLST communicates the patient’s desires for specific medical treatments during a medical emergency. These forms are indicated for individuals with serious illnesses or advanced frailty near the end of life. The POLST form becomes official orders for the patient in that situation and is valid in a hospital, nursing home, or long-term care facility. POLST (also called MOLST, MOST, POST) programs vary from state to state (NPP, 2019; Morrow, 2018; NCI, 2015a).
If a person has no advance directives and no guardian, 44 states have “default surrogate consent laws” that usually provide a hierarchy of family decision-makers, beginning with the spouse, who can make decisions for a person not competent to make their own healthcare decisions. Almost half (22) of these states do make a provision for a “‘close friend’ familiar with the person’s values” to make decisions if there are no family members or none are available. In addition, 11 states have established a mechanism for what to do for “unbefriended” patients (Wood, 2018).
Less than 30% of Americans have advance directives so the surrogate laws actually cover the majority of decisions for patient who have been rendered unable to make their own decisions. Yet, a recent focus group conducted by the American Bar Association found that in on-the-spot situations in hospitals the process by which surrogates were determined might or might not conform to state laws. However, many hospitalists noted their primary concern was to determine what the patient’s values were and what they would have wanted (Wood, 2018).
Care at the End of Life
Care at the end of life involves a team-oriented approach that includes expert medical care, pain management, and emotional and spiritual support. Care is tailored to the person’s needs and wishes while providing support to the person’s loved ones.
Palliative care is given to “improve the quality of life of patients who have a serious or life-threatening disease. The goal of palliative care is to prevent or treat as early as possible the symptoms of a disease; side effects caused by treatment of a disease; and psychological, social, and spiritual problems related to a disease or its treatment. Also called comfort care, supportive care, and symptom management” (NCI, 2017, 2015a; NHPCO, n.d.).
Palliative care utilizes an interdisciplinary approach that focuses on the physical, psychological, social, spiritual and practical needs of patients who have progressive incurable illnesses. It can also address the needs of the patient’s caregivers. Palliative care can be given at any time throughout the course of an illness, along with curative and aggressive treatments. It includes interventions that are intended to maintain quality of life and ease the suffering of both the patient and family. As death approaches, palliative care typically intensifies to ensure that comfort is a priority and practical needs are addressed. When palliative treatment is given at the end of life, care is taken to make sure the patient’s wishes about treatments are followed (NCI, 2017, 2015a; NHCPO, n.d.).
Palliative care got its start in hospice programs but is now also used in hospitals, nursing facilities, and home health agencies. While hospice is providing service to patients with life expectancies in months, palliative care can be given at any time and while the patient is still receiving treatments for their disease (NHPCO, n.d.).
Choosing hospice care doesn’t mean that you’ve given up hope. . . It means that you’re changing what you hope for.
Hospice is a special type of care in which medical, psychological, and spiritual support are given to patients and their loved ones when therapies are no longer controlling the disease. While hospice and palliative care both provide comfort and support for patients, palliative care is available throughout a patient’s experience with their disease. A person’s treatment continues while receiving palliative care, but with hospice care, the focus shifts to just relieving symptoms and providing support at the end of life (NCI, 2018, 2015a; NHPCO, 2018).
The goal of hospice care is to help the patient live each day to the fullest by controlling pain and other symptoms and making the person as comfortable as possible. The focus is on caring, not curing, with no intention to either hasten or postpone death. If the patient’s condition improves or goes into remission, hospice care can be stopped and active treatment pursued again (NCI, 2018, 2015a; NHPCO, 2018).
Hospice care is most often done at home but can also be provided in hospitals, nursing homes, and special inpatient facilities. Hospice services can include:
- Doctor and nursing services
- Medical supplies and equipment
- Drugs for managing symptoms and pain
- Short-term inpatient care
- Volunteers to give caregivers a break
- Counseling and spiritual care
- Social work services
- Grief counseling and support (NCI, 2018, 2015a; NHPCO, 2018)
The Hospice Team
The hospice care team members are all specially trained and include doctors, nurses, home health aides, social workers, clergy or other counselors, trained volunteers, and speech, physical, and occupational therapists, if needed. Everyone is specially trained and committed to supporting the emotional needs of the patient and family members as well as addressing medical symptoms. Their focus is on the patient’s goals and plan for end-of-life care (NCI, 2018; 2015a; NHPCO, 2018).
In addition to managing the patient’s pain and other symptoms, hospice team members can help patient and family members with the emotional, psychosocial, and spiritual process of dying, and provide grief support to surviving family members for up to one year. Because in most cases a family member serves as the primary caregiver, the team is an important source of instruction and support, and can facilitate arrangements for caregiver respite time (NHPCO, 2018).
Paying for Hospice
Most insurance plans, including Medicare and most Medicaid plans, cover hospice care once they receive certification from the attending doctor and the hospice medical director that the patient has a life expectancy of six months or less. The patient will also be required to sign a statement indicating that they are choosing hospice care. Hospice care can continue past the six months as long as the doctors recertify the patient’s status (NCI, 2018; 2015a).
Many Medicare recipients benefit from hospice care. In 2016, 1.43 million Medicare beneficiaries were in enrolled in hospice care for at least one day. Of all those receiving Medicare who died, 48% had received one day or more of hospice care and were enrolled in hospice care when they died. However, the proportion enrolled in hospice at the time they died varies widely by state, from a low of 23% in Puerto Rico to a high of 58% in Utah (NHPCO, 2018).
More than 90% of U.S. hospices are certified by Medicare, for a total in 2016 of 4,382. People over 65 account for 80% of those using hospice care (NHPCO, n.d.-a). Medicare requirements regarding certification and recertification and medical review of patients have resulted in a regulatory environment that helps ensure eligible patients are served by hospice and that they receive the quality of service they want (NHPCO, 2015).