In addition to learning a whole new vocabulary of medical jargon, you also need to learn some legalese to help you cope with and manage your parents' and in-laws' final years.
Everyone has the right to accept or refuse treatment. Usually a person does this after hearing about the risks and benefits of the treatment or procedure as well as alternatives, including no treatment at all. This is known as informed consent. Sometimes they may choose to refuse treatment without any further information; this is still their right. People have the right to appoint someone to act on their behalf should they be unable to make their wishes known. This is known as an advance directive.
Advance directives are legal documents used to enable your parents and in-laws to spell out in advance exactly what their wishes are concerning their medical care and treatment. They are used in the event that they become too ill, too confused, or otherwise unable to communicate their wishes.
There are two types of advance directives. One is a living will and the other is a health-care proxy, which may also be known as a durable power of attorney for health care or durable health-care power of attorney. These terms and the forms necessary for them vary by state and region.
The Living Will
A living will deals primarily with end-of-life decisions and focuses on questions about sustaining life if there is no hope of recovery. These are open-ended questions and should be answered as completely as possible.
For example, it could be stated in the living will that your father wants to be kept comfortable and pain free, clean and warm, and to be offered food and water. He does not want anything done to intentionally end his life.
Further, he should answer the following questions about whether he wants any of these and under what conditions he wants them:
To receive food or fluids through a feeding tube or IVs
To receive mechanical respirations (via a respirator or ventilator, also known as a breathing machine)
To be resuscitated (CPR)
To receive transfusions of any form of blood products
To begin kidney dialysis
To stop any life-sustaining treatments if they have been begun
The living will needs to be signed and witnessed. It should not be witnessed by family members. If at all possible, it is advisable to have these legal documents prepared by an attorney to ensure that rights are protected and the documents meet your state's laws.
The Health-Care Proxy
This is a durable power of attorney for health care and is broader in scope than the living will. It empowers the agent, or proxy (which is most likely you, as their primary caregiver), to make health-care decisions for your parent at any time she becomes incompetent or unable to make decisions. The agent can make decisions about matters other than life or death.
He can make decisions regarding issues such as:
Accessing or refusing physical or mental health-care or treatments
Admission or discharge from hospitals, nursing homes, or other health-care facilities
Home health care
Access to medical records
The durable power is only invoked when your parents are incompetent or unable to make decisions, such as under anesthesia. As long as your parents and in-laws are capable of making decisions, this power of attorney is irrelevant.
Your parents and in-laws can change their minds about any of these decisions at any time, as long as they are competent. The documents can be changed and old ones discarded. This would be particularly relevant to revisit and possibly update these in the event of a significant change in their health status such as a terminal diagnosis. Be sure that you make several copies of the documents and distribute them to all practitioners and hospitals. Each family member should also have a copy and understand the decisions made.
If a practitioner or hospital knows of a family member who disagrees with these decisions, especially if he wants life-sustaining treatment continued, the hospital may decide to err on the side of caution to avoid any lawsuits or litigation. Therefore, it is important to discuss these intentions and decisions openly with your family members and understand why they have been made to avoid problems and disagreements down the line. A shouting match in a hospital corridor is not the time to be discussing your mother's end-of-life wishes with your sister.
In 1991, Congress passed the Patient Self-Determination Act, which requires any health-care facility that receives federal monies to inform patients of the right to accept or refuse medical care and treatment in advance. Since almost all facilities receive some form of federal monies, they are required to ask about advance directives, living wills, and healthcare proxies and to explain their policies regarding these documents.
Durable Power of Attorney
This general power of attorney is a document that provides you with certain powers as defined in the document to act on behalf of your parents. This could be for paying bills and handling financial matters if they are out of the country for a few months or more; it does not pertain to health-care matters. This is a document that needs to be carefully drawn up with a lawyer, and everyone involved needs to understand exactly what is expected and allowed. You will also need to file this document with the appropriate institutions, such as banks or other financial institutions.
In case of an emergency or admission to a hospital, you should have a copy of these documents with you for the hospital to file. Once they have been filed, they can be accessed at the next admission. If you don't have a copy handy to take with you, it's a good idea to know where to find it quickly should it be needed.