As Benjamin Franklin said, “Nothing is certain but death and taxes.” Some people need to plan for taxes; all of us need to plan for our eventual death. Those who live with chronic illness and pain know the particularly troubling thoughts that can haunt our minds: How will I be cared for if I can no longer do this for myself? What will happen to my affairs? The urgency of planning for the possibility of incapacity, becoming unable to handle personal, financial, and legal matters before death, is more relevant than we might wish and requires thoughtful attention. Whether you are married, widowed, in a committed relationship, or single, making advance directives and attending to estate planning are the best chances to shape the future for end of life and for giving loved ones directions for distributing your estate. Without such planning, the courts step in and take charge. Such planning allows you to direct your health care to change or opt out of your state’s default rules. It gives you the authority to make personal choices for management of your life and directions at end of life and for what should happen with your estate after death. It gives loved ones a road map for your care and eliminates the burden of decision-making from family members who may be in disagreement or who simply may not know what to do.
Advance care planning, commonly known as advance directives, is a general term encompassing processes by which an individual communicates his or her preferences for future end-of-life care to others, including health-care providers, family, and members of his or her social support systems. The documents provide the mechanism for conveying personal decisions that have been made about health care, treatment choices, and estate management before one becomes incapacitated and can no longer make these decisions known. More than two decades ago, governmental mechanisms were put in place to facilitate such challenging family conversations. Since the Patient Self-Determination Act became effective in 1991, health-care institutions such as hospitals, home health agencies, nursing homes, and hospices that receive federal funds from Medicare have been required to educate patients about their rights to make decisions about their own health care. The specific requirements of this federal act state that individuals have the right to (1) facilitate their own health-care decisions; (2) accept or refuse medical treatment; and (3) execute an advance directive. The act also requires that institutions inquire whether the individual has advance directives and note the existence of such a document in his or her medical record. The act is further designed to educate staff and affiliates about an individual’s rights to engage in advance care planning and execute advance directives. Even with this act in place to protect us, only about half of all adults have their advance directives and estate planning in place with their families and health-care providers. The task of discussing and planning advance directives with family members and intimates is difficult and onerous and requires clear-eyed consideration of the truth that we will need care at some point in our lives and will eventually die.
The completion of advance directives and engagement in planning prior to a health crisis has been advocated for years, but political agendas in the last few years have intervened to create knots in the process. Reimbursement for physicians and other health-care providers to counsel patients about their rights was omitted from the 2010 Affordable Care Act and Medicare wellness visits. The talk of “death panels” in presidential campaigns was erroneous and wrong, but they contributed to individuals’ and their family members’ decisions to delay discussing preferences for end-of-life medical treatments and postpone estate planning until they found themselves in crisis. These are not decisions that should be made in haste, as the following story illustrates.
Carol, 52, has served as the primary caregiver for her 74-year-old mother for several years. “My mother was diagnosed with multiple myeloma about seven years ago and, as expected, she had periods of acute illness and times that the disease was not more active,” Carol shares. “She was as independent as an elder with cancer could be, made her own decisions, and my sisters and I decided that talking about her end-of-life wishes or estate planning would be depressing for all of us. We just ignored the whole issue. Well, she had another bout of the cancer, and we were told that it would quickly lead to her death. That just moved us all into unfamiliar and frightening territory. We didn’t know what she wanted to happen with her care. Ventilator? Do not resuscitate? Pain and sedation? Who knew? Then, after she died? Her home, her stuff…. We were at a complete loss, and our mother was unable to tell us of her decisions that would’ve been so helpful. Without having good answers to these kinds of questions, her end of life, death, and then dealing with her estate were messes that we could have avoided.”
Carol and her family are like so many. Advance directives and estate planning provide clear information about personal wishes. Such planning gives concrete choices and continued control, all of which has been spoken out loud during healthy times when all interested parties are able to think calmly. Without such directives, the medical caregiving team is legally obligated to do everything to sustain life until a responsible party can decide otherwise. And without a will, Carol’s mother’s estate was divided according to legal dictates rather than her personal wishes.
There are three advance directives necessary for good planning: the appointment of a medical directive/health-care power of attorney, general durable power of attorney, and a last will and testament.
A medical directive gives general health-care instructions to the physician and medical team in the event one becomes incapacitated and cannot make those decisions personally. Because diagnosis of a critical or terminal illness requires discussion about specific preferences for difficult medical issues, such as life-sustaining procedures or life support systems, completion of this document becomes even more essential. The advance medical directive asks one to name a trusted person called an agent, who is sometimes referred to as a health-care proxy. The name of an alternate agent is also requested. All actions by the health-care agent must be consistent with the intentions and desires of the patient. If those intentions and desires are not clear, the health-care agent’s actions must be in the best interests of the one he or she represents, considering all the benefits, burdens, risks, and treatment options. The medical directive document authorizes the agent to discuss treatment options and directions with medical care providers and to make health-care decisions on behalf of the person who has appointed him or her, including decisions about custody and personal care. This also includes directions for autopsy, organ donation, and the final disposition of the deceased’s body. The agent is typically a family member or close friend who is familiar with and will respect personal wishes. Without such a document, a judge will choose an impersonal representative who can be appointed as a legal guardian to make these health-care decisions.
The Health Insurance Portability and Accountability Act (HIPAA) is the federal privacy law that protects personal medical and other health information. HIPAA rules are complicated. Unless otherwise stated, health-care providers cannot share data. The appointed health-care proxy is treated just as the patient would be when it comes to the rights to know, use, and disclose health information and medical records. The appointment of such an agent streamlines care decisions when they are most urgent.
Three end-of-life decisions are particularly relevant in the medical directive: Do Not Resuscitate Orders (also known as Allow Natural Death), issues regarding withholding or withdrawing life support, and accepting or refusing artificial nutrition and/or hydration. These issues are related to extending life for as long as possible and speak to the use of medications, machines, or other medical procedures that in reasonable medical judgment would keep a human alive, including how nutrition and fluids would be administered if unable to take them in by mouth. The medical directive explicitly states preferences for extension of life.
General durable power of attorney
In general, a power of attorney is a document that allows an individual to act on your behalf. This person is also known as an attorney-in-fact or agent. The power of attorney described as “durable” stays valid during periods of personal incapacity or disability. During these periods, the attorney-in-fact is allowed to do a number of things, including signing tax returns, accessing safe deposit boxes, receiving income, writing checks, paying expenses, accessing retirement accounts, gathering Social Security information, and handling day-to-day financial matters. Because the attorney-in-fact will be involved with financial and personal matters, choosing a trusted person is vital. This person will have access to and the power to manage sensitive information. The durable power of attorney may be a different person than the proxy appointed to make medical care decisions.
As provided by state law, both medical and durable powers of attorney can be revoked by personal action or by a triggering event in the document’s provisions. To avoid confusion about whether the document is still in effect, revocation is best accomplished in writing, followed by destroying copies of the revoked document. Both documents become void at death.
Last will and testament
The final advance directive is the last will and testament, a legal document stating an individual’s wishes for the settlement of his or her estate after death. It is a written declaration of intention for what happens to personal assets owned when a person dies. A will is the best way to determine the distribution of personal belongings and assets, provide for family needs regarding underage children, plan wisely for taxes, and make charitable contributions. Only by having a will can the individual be assured that personal wishes will be carried out after death. A will allows an individual to choose an executor to manage these affairs after death in a way that waives surety bond requirements and allows for independent, rather than supervised, administration. A will directs where the deceased’s assets go and makes provisions for the people and causes important to the deceased.
More on estate planning
If an individual does not plan for what happens to personal assets after death, every state legislature has a plan (called the law of intestacy) that includes who will receive them and how such assets will be distributed. If a person does not choose his or her heirs, state law will choose them. Every state has a law for a will substitute, called an intestate succession, which applies to any assets that transfer under the probate process. This intestate succession does not apply to assets held jointly with right of survivorship with another person or to assets having a completed beneficiary designation on file, including life insurance and retirement accounts.
What is probate?
Probate establishes clear title to, or ownership of, an asset. When a person dies, before title to his or her assets can be passed on to heirs, everyone who has a claim to those assets must be satisfied or eliminated. Probate is simply the court-supervised process of accounting for individually owned assets after death, and includes settling personal debts and expenses and then making final distribution of remaining assets to the ultimate beneficiaries of the estate. An estate is subject to probate regardless of whether a will is in place. Before opening an estate, the court will require the person requesting appointment as executor to notify all interested parties, not just closest relatives, those identified in the will and creditors. While the process is private, it is not secret.
Putting it together
Shortly after Carol’s mother’s death, she and her siblings sat down and talked about their advance directives. “We made such a mistake by thinking it would be depressing to talk about this when Mother was well enough to let us know her wishes and desires,” Carol says. “We could’ve avoided so many problems if we had just known. All of us decided and promised each other and our own families to make our advance directives and estate planning a priority, and we have done it. It is only fair to our children and those we love.”
These are called “advance” directives for a reason — they should be taken care of far ahead of any illness that could possibly incapacitate or lead to death. As a rule, it is a good idea to review the directives and estate plan every five years to provide peace of mind for you and your family, knowing that all documents are complete and in place.
Do I need a lawyer?
For simple, straightforward advance directives and estate planning documents, a lawyer is not needed. Forms can be downloaded without a fee from www.aarp.org/home-family/caregiving/free-printable-advance-directives/. Several of the documents require a notarized signature, and all require two witnesses who are not heirs to the estate. If there is any concern about financial trouble or in the case of more complicated business matters, such as starting or closing a business, a consultation with a lawyer is definitely in order.
For more Information
Monday, April 16, 2018, has been designated National Healthcare Decisions Day (NHDD), an initiative of The Conversation Project. The group exists to inspire, educate, and empower the public and providers about the importance of advance care planning. NHDD is an initiative to encourage patients to express their wishes regarding health care and for providers and facilities to respect those wishes, whatever they may be. For more information, visit www.nhdd.org.