Primer
Life is filled with experiences that teach us the importance of planning ahead and taking care of those we love in the event we are unable to do so ourselves. One of the most critical of these issues is planning for the end of our lives.
Without doubt, it is a difficult subject to discuss, but it’s very important. In this section of 3ANav, we pose the topic in the hopes you will feel more comfortable in allowing yourself, or a family member the opportunity to consider the actions necessary to plan for end of life for the sake of your well-being, as well as your loved ones.
None of us knows exactly how or when we will die, but we all know it will happen … someday. If we can in some manner approach death in the same way we approach life … intentionally and with an effort to do as much good and as little harm as possible, then it is fair to say we are doing everything possible to plan for and embrace our eventual death as consciously as possible.
That said, few people have actually put their wishes in writing or even discussed them with their next of kin, leaving doctors and families in the lurch when lives are uncertain. Only about one-third of Americans have completed any kind of advanced directive to guide their families and physicians when they cannot speak for themselves. And of the advanced directives that have been executed, many, if not most, are too vague to be truly useful.
Lacking guidance from patients and families, physicians too often end up providing life support – often at high costs - for the terminally ill even though most measures taken such as the use of feeding tubes, ventilators and cardiopulmonary resuscitation do very little to prolong meaningful life.
Sometimes, families out of guilt or misunderstanding insist ‘everything that can be done should be done’ to keep their dying relative alive as long as possible. They equate the failure to provide life support with ‘killing’ the patient. In these instances, the uses of high-tech medical interventions are commonly employed. On the other hand, there are those who believe the soundest decisions concerning end of life revolve around ‘keeping people comfortable, and letting nature take its course.’ Given the opportunity, they contend most people would not choose a prolonged death, but a natural, dignified one instead.
‘Asking the Right Questions’
Q: What are the key issues surrounding ‘end of life?’
A: Sometimes, in spite of treatment, a condition or illness will cause death. In those cases, patients can decide what they do and do not want done. They can decide whether they want aggressive treatment that might prolong life or whether they prefer to stop treatment, which could mean dying sooner but more comfortably. They may choose to die at home. Others enter a hospital or a hospice. Some may wish to plan their own funeral.
Q: What is an advanced directive?
A: An advanced directive is any legal document that allows a patient to express his or her wishes concerning health care and/or appoints someone to make medical treatment decisions for them if they cannot make those decisions for themselves. Advanced directives can help make the patient’s wishes clear to families and health providers and provide instructions on what kind of care the individual wishes to receive as their illness progresses and as they become unable to make medical decisions.
Living wills and Durable Powers of Attorney for Health Care are both types of Advanced Directives.
Advanced directives are a difficult subject to even think about, let alone broach with family, but it is an important conversation to have in order to ensure that you live … and die … according to your own desires. Therefore, the types of wishes preferred should be discussed in detail with spouse, trusted friends or family members.
(Portions of this information courtesy of the American Bar Association.)
Q: Are there any age limitations as to who can prepare an advanced directive?
A: In general, anyone 18 or older can obtain an advanced directive.
Q: Do I have to use a state-specific statutory form for an advanced directive to be valid?
A: Not for most states, however, different states have different laws regarding advanced directives with variables pertaining to the number and types of witnesses needed to obtain the document. The U.S. government has granted citizens the right to have advanced directives, which allow mentally competent people to outline their health-care decisions for a time in the future when they are unable to speak on their own behalf.
Even if your state does not have laws permitting the use of a living will, one can be written to help direct your family regarding health care decisions. State-specific advanced directives can be requested and more information about these documents can be found at the National Hospice and Palliative Care Organization’s website at www.nhpco.org. (Information Hub.)
Q: Are there different types of advanced directives?
A: Yes, there are three major forms – a living will, durable power of attorney (DPA) for health care and a do not resuscitate order (DNR.)
Q: What is a living will?
A: A living will is an advanced directive that is only used should an individual become terminally ill. Two doctors must agree that a patient is either in an irreversible coma or in the end stage of a fatal illness with less than six months to live and is unable to make medical decisions.
In a living will, a person can describe the types of treatment that should be administered or withheld in certain situations. This document is legally binding and cannot be overturned by anyone, including doctors or family members, other than the patient. The patients themselves can revoke this document at any time by telling a witness, tearing it up or putting their new decision in writing. End of life treatment can still be stopped without a living will but only if everyone involved in the patient’s care decisions is in agreement.
Q: What is durable power of attorney?
A: If you wish to name someone else to speak on your behalf when you are not able to do so, you can obtain a durable power of attorney (DPA), also called a health care proxy, agent, representative, or surrogate. In this document, you can name any adult (over 18) to be your surrogate decision maker. This person will then be legally allowed to make medical decisions about your treatment if you become incapacitated. Unlike a living will, a DPA can be used at any point that you are unable to make your own health care decisions, not only in the case of a terminal illness or coma.
A DPA can outline the types of treatments that you permit your proxy to make decisions about and can even describe your treatment wishes in various medical scenarios. Like a living will, a DPA can also be revoked at any time by informing a witness, tearing it up or putting it in writing.
For a DPA to take effect, two doctors need to agree independently that you are unable to make health care decisions. The person named in the document, however, does have the right to refuse the responsibility. To prepare for this possibility, other people can be named in the DPA as successors.
Q: What is a do not resuscitate order?
A: A do not resuscitate (DNR) order is the most universally accepted form of advanced directive. It informs doctors and hospitals not to use cardiopulmonary resuscitation (CPR) if your heart stops beating or if you stop breathing. A DNR request can be made at any time, as long as you are deemed fit to make medical decisions. Or, in the case of a DPA, it can be made by your representative. Your doctor will write the request prominently in your medical chart so all members of the hospital will be aware of it.
Q: Who should be made aware of any advanced directives I may have?
A: Generally, a hospital will ask the patient or family about any advanced directive upon admission. Doctors and named health-care proxies should be given copies of these forms for their records. Some people choose to also give copies to their families, but even if you don’t, it is important that you inform your family of the existence of an advanced directive and take the time to discuss your decisions with them. No family member, other than one named by a DPA, can override an advanced directive. The individual for whom the advanced directive has been developed is only able to override a health care proxy’s decision if deemed mentally capable of making such a decision.
Q: When should an advanced directive be prepared?
A: Ideally, advanced directives should be planned well ahead of any illness or life-altering health event, together with spouse and/or family while loved ones are well enough to participate. Doing so can help all involved feel a sense of control over his or her future and relieve any one person from having to make difficult decisions on their own.
Q: When should I revise my Advanced Directive?
A: As often as you wish. Annually is recommended, but updates are especially important following a health or family status change.
Q: Should I discuss end of life issues with my doctor?
A: Yes, as well as with any other healthcare providers. Have them explain choices and options thoroughly. Make sure you discuss pain management with them and give them a copy of your advanced directive. Physicians are not required to follow directives if they disagree with your wishes due to objections of conscience or for other medical reasons, so it’s best to have a candid discussion with them and ask them if they plan to honor your directives. Also, make arrangements for your family members to have permission to discuss your situation with your doctor and/or other key healthcare providers especially if those providers do not intend to follow your advanced directive in which case, they may be required to transfer you to another physician’s care. Because of medical privacy laws, they cannot talk to your family member about you or your care without your permission.
Q: Who else can help me with end of life planning?
A: It is often recommended to have an advocate - a family member, friend or other caregiver who is there to provide support - to be present at doctor’s visits or in the hospital. The advocate makes sure that whoever they are caring for has made it very clear and given their permission so the advocate can be informed and in a position to make decisions about their loved one’s care.
Q: What does ‘end of life’ care focus on?
A: Care at the end of life emphasizes making patients comfortable. Commonly referred to as ‘comfort care,’ patients still receive medicine and treatments to control pain, nausea, anxiety, depression and other symptoms.
Q: What should I know about hospice?
A: Patients tend to be more optimistic about their treatment than doctors, studies show, and often choose aggressive therapy even if there is little chance of benefit. But being open and honest is the only way to help a patient make the best decision about hospice care. The urge to fight is understandable, and patients can enter clinical trials when standard treatments fail to work. Yet there is still the reality of terminal illness and the consequences of false hope are often overlooked. Patients can unfortunately die in a hospital when they could be taking advantage of symptom control.
Oncology groups say that hospices are better suited for patients who are expected to live only a few months, where the surroundings are more like home than a hospital, and the emphasis is on relieving pain. There are no defined rules on when to seek hospice care, but the topic should begin with an honest discussion about a patient’s prognosis.
Q: How do I discuss hospice with my doctor?
A: Doctors typically first ask their patient if they want to know the full details of their illness. Then, the doctor and patient can work together to help set goals on what the patient wants from end of life care. Expressing one’s wishes about when to receive hospice care – or whether to be resuscitated or not – is something that patients, families and doctors should talk about openly together.
It’s also important to talk about hospice care early because often people go to hospice later than when they could have really benefited from it. This is often because people are worried that the doctors are going to give up on them if they go to hospice or that going to hospice means things are really bad. And yet, hospice and palliative care can be the source of a tremendous amount of help in the experience of being with a dying family member by lessening feelings of panic or helplessness.
Q: What are some ways that caregivers can provide emotional comfort to a terminally ill patient?
A: Everyone has different needs, but some emotions are common to most dying patients. These include fear of abandonment and fear of being a burden. They also have concerns about loss of dignity and loss of control. Some ways caregivers can provide comfort are:
· Keep the person company – talk, watch movies, read, or just be with the person.
· Allow the person to express fears and concerns about dying, such as leaving family and friends behind. Be prepared to listen.
· Be willing to reminisce about the person’s life.
· Avoid withholding difficult information. Most patients prefer to be included in discussions about issues that concern them.
· Reassure the patient that you will honor advanced directives.
· Respect the person’s need for privacy.
Q: How can I be sure a loved one’s treatment wishes are honored as they move from one care setting to another?
A: If you have a loved one who is elderly and seriously ill, you know their health care status can change in an instant. Within minutes, they could go from a nursing home to a hospital ICU with aggressive care being delivered along the way and at a hospital, whether your loved one wants aggressive treatment or not. The Transportable Physician Orders for Patient Preferences (TPOPP) is a form designed to express an individual’s preference for levels of treatment, from full treatment including resuscitation attempts to limiting the use of medically assisted fluids, nutrition and antibiotics. The form is voluntary and is intended to help identify one’s wishes and assist physicians, nurses, health care facilities and emergency personnel to honor and carry out wishes for the use of life-sustaining treatment.
For more information about TPOPP, visit The Center for Practical Bioethics website at www.practicalbioethics.org.
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