Being comfortable talking about advance care planning and end-of-life care with your clients takes thought, compassion, and practice. Explaining the basics about advance directives may come easily when clients have a good idea of what they want. But when there is confusion about care or treatment options, befuddlement over legal specifics, or disharmony within the family, your task can become much more difficult. Overcoming misconceptions about what the legal documents can and cannot do can take patience and courage. When entering into such conversations with clients, it’s essential that you have a firm understanding of the subtle but significant differences among the legal and medical options.
What We Say vs. What We Do
More than seven in ten people say they have given a great deal or some thought to their wishes for medical treatment at the end of their lives, according to the Pew Research Center, Views on End-of-Life Medical Treatment (2013; tinyurl.com/os6hvu9). However, in a 2013 survey reported in the American Journal of Preventive Medicine (tinyurl.com/qdz6j7o), just over a quarter of respondents said they actually had an advance directive. According to the 2011 report Living Well at the End of Life: A National Conversation, produced by the National Journal and the Regence Foundation (tinyurl.com/qau3hj8), most people state a clear preference for options that make the end of life better, not just longer, including spending quality time with family and friends, having their pain managed, and avoiding emotional and financial devastation for their family. Despite wanting to avoid financial devastation, 43 percent of Medicare patients end up spending more than the total value of their assets, excluding real estate, on end-of-life care, while 25 percent spend all their assets, including any money from home or property. Overall, the average Medicare patient spends more than $38,500 out of pocket during their final five years, with couples spending more than $50,000 when one spouse dies (tinyurl.com/okkxwxh). Seven in ten say they want to die at home, but 74 percent die in a hospital or nursing home.
Living Wills vs. Health Care Powers of Attorney
The multiple advance planning documents can be confusing for clients. In addition, some states give the documents different names or combine them in various ways. The most generic term for the documents in which the client expresses health care treatment preferences is an “advance directive.” Most people have heard of a living will, yet it’s only half the legal instruction that makes up an advance directive. A living will outlines the treatments the person would or would not want if unable to communicate and death is imminent or the person is permanently unconscious, in a vegetative state, or in the end-state of a chronic condition such as Alzheimer’s disease.
The problem with living wills is that in most states the law restricts the circumstances under which a living will is effective. Typically, it is limited to specific life-prolonging treatments, such as use of respirators, cardiopulmonary resuscitation (CPR), or intravenous nutrition or hydration.
The second part of an advance directive is the selection of a health care agent who can speak for the patient if he or she is unable to do so. This is also referred to as selecting a health care proxy or signing a health care power of attorney. In an advance directive, the client can give the agent broad authority to make any health care decision, not only about life-prolonging treatments. The agent can get necessary information from health care providers and make sure decisions are made as the patient would want them made.
Perhaps even more important than signing the document is the conversations your client has with the person selected as the health care agent. Think of an advance directive as a written record of the conversations between the client and the agent about how the client wants to live up until the moment of death.
Medical Orders vs. Patient Directives
In addition to patient directives, there are medical orders such as do-not-resuscitate (DNR) orders, out-of-hospital DNRs, and physician orders for life-sustaining treatment.
Unlike the health care powers of attorney that a patient fills out, a DNR order is an order made by a doctor that is placed in the patient’s medical record. The DNR directs the hospital medical team not to attempt to revive the patient in the event the patient stops breathing or the heart stops beating. The order will be entered only in those special circumstances where the doctor has confirmed with the patient (when possible) or the health care agent that not trying to restore breathing or heart rhythm is the preferred alternative.
Some states also have provisions for out-of-hospital DNRs (OOH DNRS). These are orders that direct emergency medical service (EMS) responders not to try to revive a patient. Under most circumstances and state laws, EMS teams responding to a 9-1-1 call are required to make all attempts to revive an unresponsive person. Even if the person has a living will that specifies otherwise, EMS responders cannot honor it. People living at home or in an assisted living facility may not want to be resuscitated, but because of their medical condition they cannot stop the EMR team from going ahead with CPR, defibrillation, or other life-sustaining treatments. To overcome this, the patient can request an OOH DNR. After the doctor enters the OOH DNR, the patient wears a special DNR medical alert bracelet. In those states with OOH DNR laws, EMS personnel are trained to look for the DNR bracelet and to know that legally they cannot try to revive the person.
All but six states also have physician orders for life-sustaining treatment (POLST) protocols. Typically, a state-prescribed POLST form is prepared for very sick patients with multiple chronic conditions. Although the details vary from state to state, as does the name (medical order for scope of treatment, or MOST, for example), in general this protocol is an effort to encourage conversations among medical providers, patients, and families to understand and document the patient’s current treatment preferences. A POLST complements, rather than replaces, an advance directive. It records in detail the patient’s preferences and puts those decisions into medical orders to be followed in a medical crisis. The form is printed on brightly colored paper so it can be readily seen, followed, and transferred with the patient from hospital to nursing facility and back to the hospital. EMS personnel must honor a POLST. To find out about the POLST protocol in your state, go to polst.org.
Hospice Care vs. Palliative Care
Hospice care and palliative care are very similar when it comes to the most important issue for dying people—the care they receive during their final days. Most people have heard of hospice care and have a general idea of what services hospice provides. Many fewer understand that palliative care is the “comfort care” provided in most hospitals as well as through hospice. Both hospice and palliative care protocols call for patients to receive a coordinated approach where medications, symptom treatment, and day-to-day care are provided through a single program. Where hospice care programs and palliative care programs differ is in the care location, timing, payment, and eligibility for services.
Generally, a patient’s hospice care program, overseen by a team of hospice professionals, is administered in the home. Hospice often relies on the family caregiver, as well as a visiting hospice nurse. While hospice can provide round-the-clock care in a nursing home or a special hospice facility, this is not the norm. Palliative care also can be administered in the home, but it is most common to receive palliative care in an institution such as a hospital, extended care facility, or nursing home. Palliative care teams are made up of doctors, nurses, and other professional medical caregivers, often at the facility where a patient is receiving treatment. The team administers or oversees most of the ongoing comfort care that patients receive.
To be eligible for hospice, the treating physician must certify that the patient is considered to be terminal or within six months of death. Palliative care can be received by patients at any time, at any stage of illness, whether it be terminal or not.
Whereas Medicare covers all the costs of hospice care, private insurance coverage for hospice can vary. On the other hand, because palliative care is administered through the treating hospital, it is likely to be covered by hospitalization insurance and billed like regular hospital and doctor costs. Good advice is to have the client check the details with the private insurance company, doctor, or hospital administration.
Most hospice programs concentrate on the patient’s comfort rather than aggressive treatment or life-prolonging procedures. In fact, once a Medicare patient is enrolled in hospice, Medicare will not pay for treatment, procedures, or medications intended to cure the patient of the underlying disease. Because there are no time limits on when patients can receive palliative care, it can be available for patients who want and need comfort at any stage of any disease, whether terminal or chronic. In a palliative care program, there is no expectation that life-prolonging therapies will be avoided.
As explained by physician and author Atul Gawande in Being Mortal: Medicine and What Matters in the End (Metropolitan Books, 2014; tinyurl.com/p8c3bnv), the approach of palliative care physicians is to make sure patients understand their illness and their situation; ask what priorities make life worth living; listen closely; and try to tune treatment to these priorities to give the best quality to whatever time is left.
Whether comparing the pros and cons of living wills versus health care powers of attorney, or explaining the differences and similarities of hospice and palliative care, our conversations with clients should focus on listening to their needs and tailoring any legal documents to empower them to live well to the very end.