Advance directives are vital documents for personal care goals

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Terri Maxwell, Ph.D.
Terri Maxwell, Ph.D.

The best way for individuals to ensure that their wishes for end-of-life care will be carried out is by completing advance directives — legal documents that instruct physicians on how to carry out medical decisions, especially when an individual is unable to communicate during a medical crisis. This includes Durable Power of Attorney for Healthcare, a Living Will, and a form confirming the Physician Orders for Life-Sustaining Treatment.

For many skilled nursing facility residents, end-of-life care plans and decisions are commonly made by surrogate decision-makers, and are far from one-size-fits-all. When available, instructions expressing the individual's care wishes should be part of the resident's plan of care beginning at admission.  The goal is to ensure that the person's wishes are respected while relieving stress, diminishing anxieties, and avoiding disputes among loved ones.

Surveys show that, among long-term care patients, those receiving care in a facility are more likely to have an AD in place. Nevertheless, only 25% of Americans have recorded their end-of-life medical wishes in a legal document. This pervasive lack of advance care planning presents a problem because more than half of patients are unable to participate in end-of-life decisions when the time comes.

Medicare requirements 

The Patient Self-Determination Act included a list of Medicare requirements for healthcare facilities regarding ADs. Under this law, facilities such as hospitals and SNFs must ask each patient upon admission if he or she has an AD and record its existence in the patient's file. 

Facilities cannot require any patient to create an AD before providing treatment or care, and likewise, Medicare patients are not required to have an AD before they receive care.

Whether or not an AD is in place, the goal is for providers to understand patients' wishes on how they want to die, and whether treatment should be continued — and under which circumstances — or whether treatment should be ceased. When an AD is not present, SNF staff should perform advance care planning with the resident and their family. If the resident does not have decisional capacity, it is important to review goals of care with the family with an emphasis on what the person's values are and what they would want for themselves under certain conditions, rather than the family's wishes.

Meaningful conversations: The first step

Honest communication about 1) what is most important to people, 2) under what conditions or circumstances they would accept treatment, 3) and when they would prefer to refuse interventions can help families avoid the stress of guessing what a patient would have wanted. Loved ones may take different viewpoints, so during these discussions, it's important that they be open with each other and focus on truly understanding the opinions of others.

When completing an AD, the patient should consider what is most important, asking such questions as “Who can make medical decisions with the physician if I am unable?” and “If your health situation worsens, what are your most important goals?” There are a number of helpful resources for healthcare professionals to facilitate these conversations, including those from The Conversation Project, Five Wishes, and The Serious Illness Conversation Guide by Ariadne Labs.

Once they have discussed their goals with family members to reach a shared understanding of their wishes, the next step is to make it official with an AD.  While the process can sometimes be difficult, most people feel a sense of accomplishment and greater peace of mind after having the conversation and completing the AD process.

Legal points to consider

ADs are legally valid throughout the United States. While a lawyer is not needed to fill out an AD, the individual's AD becomes legally valid as soon as it is signed by the person in front of the required witnesses. Keep in mind that the laws governing ADs vary from state to state, so it is important to complete and sign ADs that comply with the state's law. For instance, some states require the AD to be notarized, whereas others do not.

One example of a state that is seeking to boost AD compliance is Delaware. The Delaware Health Information Network, a statewide health information exchange, has recently implemented an end-of-life registry that captures medical orders that describe the scope of treatment planned for a terminally ill person. The registry follows a trend in several other states of translating a patient's wishes into a medical order.

Given that one state's AD does not always work in another state, the best solution is for patients to complete ADs for the state or states in which they spend the most time.

Keep in mind that ADs are not always followed. If someone dials 911 and EMS comes to the home, they must attempt to resuscitate that individual and transport them to a hospital, unless they have an out-of-hospital Do Not Attempt Resuscitation (DNAR) or Do Not Resuscitate (DNR) order, according to the American Bar Association.

Both the patient and their doctor must sign these forms. Physician Orders for Life Sustaining Treatment (POLST) is not an AD, but a set of specific medical orders signed by the seriously ill person's physician that should be followed by EMS, emergency care staff and others. ADs remain valid until changed by the individual, and should be reviewed periodically to ensure that they still reflect individual wishes.

To learn more about advance directives and specific state requirements, visit the National Hospice and Palliative Care Organization.

Partnering with palliative experts

Many caregivers, family members, physicians and other healthcare professionals may find it uncomfortable discussing advance care planning, including ADs, so it can be helpful to involve palliative care experts to facilitate clear communication.

What's more, SNFs are assuming greater responsibility and financial risk for episodes of care, no matter where the patient is located, so they are wise to consider partnering with a community-based care program that relies upon specially palliative trained and equipped nurses and clinical social workers who interact and coordinate care with the designated physicians or other professionals who are responsible for the person's ongoing medical care.  

This collaborative care management approach improves care coordination, reduces the cost of care, and results in greater patient/caregiver satisfaction.  It is also an ideal model for establishing goals of care, ensuring ACP and the completion of ADs prior to admission or readmission to a SNF.  

Most importantly, it's a more personalized, high-touch approach to care in the community, offering communication, guidance on ADs, and enhanced psycho-social support at a time when individuals with advanced illnesses need it the most.

Terri Maxwell, Ph.D., APRN, is the chief clinical officer at Turn-Key Health. 
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