One of the biggest issues in the world of geriatrics and gerontology is advancing illnesses and end of life care and issues. It is a topic that makes a great majority of people uncomfortable and thus is generally avoided.
I dealt with this first hand nearly three years ago with my dad when he was hospitalized for a matter of months: we dealt with advanced directives, being resuscitated while having a Do Not Resuscitate order, being moved in and out of the intensive care unit, ultimately end of life decision making and finally, his passing. These incredibly difficult experiences have definitely ignited a passion within myself to be open about these issues and hopefully help the dialogue happen. I mean there isn’t really anything else as important or as sacred as this process
Last week I went to two funerals. I’ve decided to focus the next couple of blog posts on this topic. Part One will be called Let’s Talk About: End of Life Care & Decision Making and Part Two will be about Grief, specifically Caregiver grief, which has some different characteristics involved.
Advanced Age & Illness: Holding On and Letting Go
Our culture tells us that we should fight hard against age, illness and death: "Do not go gentle into that good night," Dylan Thomas wrote. And holding on to life, to our loved ones, is indeed a basic human instinct. However, as an illness advances, "raging against the dying of the light" often begins to cause undue suffering, and "letting go" may instead feel like the next stage.
The opinions of the dying person are important, and it is often impossible to know what those beliefs are unless we discuss the issues ahead of time. In caring for someone with memory loss, it is important to have the conversations as soon as possible, while he/she is still able to have an informed opinion and share it. Planning ahead gives the caregiver and loved ones choices in care and is most considerate to the person who will have to make decisions.
Holding On
Humans have an instinctive desire to go on living. We experience this as desires for food, activity, learning, etc. We feel attachments to loved ones, such as family members and friends, and even to pets, and we do not want to leave them. We do not so much decide to go on living, as find ourselves doing it automatically. Robert Frost said, "In three words I can sum up everything I have learned about life: It goes on." Even in difficult times, it is our nature to hold on for better times.
When we realize that the end of life may be approaching, other thoughts and feelings arise. The person who is ill will want to be with loved ones, and may also feel a sense of responsibility towards them, not wanting to fail them nor cause them grief. He/she may have unfinished business. For example, the person may or may not want to reconcile with estranged family members or friends. Fears arise, and may be so strong that they are hard to think about or even admit to: fear of change, of the dying process, of what happens after death, of losing control, of dependency and more. Both the person who is ill and the caregiver might also experience resentment, guilt, sadness and anger at having to do what neither wants to do, namely face death and dying.
Even in facing death, hope remains. The object of hope may change. As death comes closer, the family may hope for a restful night, or another visit with a particular friend, or just a quiet passing from this life to whatever we hope follows it. Often, as an illness progresses to an advanced stage, two seemingly incompatible ideas may arise in our minds. The Jewish prayer of the gravely ill puts it well for both the person who is ill and the loved ones caring for him/her: "I do not choose to die. May it come to pass that I may be healed. But if death is my fate, then I accept it with dignity."
Letting Go
As death nears, many people feel a lessening of their desire to live longer. This is different from depression or thoughts of suicide. Instead, they sense it is time to let go. Perhaps, as in other times in life, it's a sense that it's time for a major change like one might feel when moving away from home, getting married, divorcing or changing to a new job. Some people describe a profound tiredness, a tiredness that no longer goes away with rest. Others may reach a point where they feel they have struggled as much as they have been called upon to do and will struggle no more. Refusing to let go can prolong dying, but it cannot prevent it. Dying, thus prolonged, can become more a time of suffering than of living.
Family members and friends who love the dying person may experience a similar change. At first, one may adjust to managing a chronic illness, then learn to accept a life limiting illness, and then accept the possibility of a loved one dying. Some may refuse to accept the inevitability of death. Lastly, one may see that dying is the better of two choices, and be ready to give the loved one permission to die. As mentioned, the dying may be distressed at causing grief for those who love them, and, receiving permission to die can relieve their distress. There is a time for this to happen. Before that, it feels wrong to accept a loss, but after that it can be an act of great kindness to say, "You may go when you feel it is time. I will be okay."
Other Concerns
Letting go gets mixed up in our minds with a person wanting to die, although these are really separate situations. There are various reasons a person may want to die, reasons quite separate from those for letting go. Depression is one response to finding life too painful in some way. Some people cannot tolerate losing control, so they want to take control of dying. It can be unpleasant to be disabled, or in a place one does not want to be, or isolated from the important people and things in one's life. Very often, a severely ill person feels like a burden to family and friends, and may wish to die rather than let this continue. Fears of the future, even of dying, may be so great that a person wants to die to get away from that fear. Inadequately controlled pain or other symptoms can make life seem unbearable.
For many of these situations the right sort of help can make a great improvement, and replace the desire to die with a willingness to live out this last part of one's life. At this time, professionals such as mental health providers, a hospice team, or pain-management specialist, may be called upon for consultation.
Chronic Illness
Many, or even most, people go through a period of chronic illness before they die. Along the way there are numerous choices to make. Caregivers and people they care for have to decide whether or not to get a particular treatment or procedure. How long can one keep trying to do usual activities, including work, and when does it seem time for one to face that that phase of life is over? Most of us have things we have dreamed of doing, but never got around to. Now may be the time to do that thing, no matter how difficult, or it may be time to let it be just a beautiful dream. Chronic illness brings up one situation after another where caregivers and care receivers must do their best to communicate about beliefs and options, and then decide either to hold on or to let go.
Planning Ahead
Planning ahead means thinking about what is important, and what is not. It also means talking about this with those close to us. Even though we think we know what someone else thinks and believes, we really do not know until we ask. You cannot read other people's minds.
When we think about the last part of our own or someone else's life, consider these questions:
- What makes life worth living?
- What would make life definitely not worth living?
- What might at first seem like too much to put up with, but then might seem manageable after getting used to the situation and learning how to deal with it?
- If I knew life was coming to an end, what would be comforting and make dying feel safe?
- What, in that situation, would I most want to avoid?
Knowing what really matters to you is worth considering. How important is being able to talk with people, engaging in daily activities, physical comfort or general alertness to you? What comes to mind when you think about the burden of care on others, being at home, or not being there? How much distress is it worth in order to live another month? And what medical procedures are not worth enduring? From your perspective, what is the best way for a person to die, and how important is it to you to be in control of how you live and how you die? Whose opinion should be sought in making choices about the care received when an illness has progressed to an advanced stage?
One especially important matter is to complete the Advance Health Care Directive for both the person who is ill and the caregiver, so that there is an official spokesperson when one is too sick or too confused to speak for him/herself.
If, as caregivers, we haven't had the necessary conversations—whether due to reluctance, dementia, or a crisis—we might have to think about the issues raised above without a lot of information.
Some questions that might help in thinking about this are:
- What has that person actually told me?
- How can I find out for sure about her or his wishes?
- Turning now to myself as the caregiver, what would be important to me?
- What would I especially like to know about that person's wishes?
- What would be the limits of what I could do?
- Could I take time off work? How much? What are my financial constraints?
- What physical limitations do I have?
- What kinds of care would be just too much emotionally for me?
- Might I provide more comfort if I let go of some of the daily hands-on caregiving, and allow someone else, even a paid caregiver, to assume this role?
- Am I willing to accept the responsibility of being someone's official spokesperson?
- If that person has relatives who would be especially difficult to deal with, how would I manage being the official maker of decisions?
All of these questions may sound very difficult to discuss now, when the time for decisions is still in the future. However, they are harder to discuss when someone is really sick, emotions are high, and decisions must be made quickly. Chronic pain, frailty, and cognitive decline may take away the ability to discuss complicated issues. The earlier everyone sits down to talk, the better. The best way to start is simply to start. Arrange a time to talk. You may say you want to talk about things that might happen in the future, in case of serious illness. Have some ideas to bring up. Be prepared to listen a lot, and to ask questions. Do your best not to criticize what the other person says. If you know the other person will not want to talk much about this topic, have just one or two important things to say or to ask about. Be prepared to break off the conversation, and to come back to it another time. Write down the important things people say. Eventually, you can use your notes to prepare a statement of wishes and make this statement part of an "advance directive" about health care decisions, whether or not the formal document has been completed.
Many families find it is easier to have such a critical discussion with the presence and guidance of an impartial facilitator. Some social workers, case managers, or faith-leaders are skilled in providing this support. Asking for a professional to assist with the discussion may relieve individual family members from the burden of having to take on this role.
It is also important to talk with your physician about treatment choices. You may ask the doctor to complete a POLST, or Physician's Orders for Life Sustaining Treatment. This form is a set of medical orders, similar to the DNR (allow natural death to occur). On this form one can state that he/she does or does not want to be resuscitated, and whether or not one would want a feeding tube, ventilator and other treatments. Decisions to provide or withhold life support are based on personal values, beliefs and consideration for what a person might have wanted. Such decisions are painful. Family members should give themselves ample time to cope with these life and death decisions and to process feelings of doubt, guilt or blame that may surface.
POLST is not for everyone. Only individuals with serious, progressive, chronic illnesses should have a POLST form. For these patients, their current health status indicates the need for standing medical orders. For healthy individuals, an Advance Directive is an appropriate tool for making future end-of-life care wishes known to loved. Professionals in medical offices, hospitals, community-based services, and hospice teams are skilled at assisting individuals or family groups at working with these very normal, but painful, emotions.
Making the Decision
Is it time to let go? Or time to give a loved one permission to die? There are three ways to help decide.
First, look at the medical situation. Has the illness really reached its final stages? When it has, the body is usually moving on its own toward dying, with strength declining, appetite poor, and often the mind becoming sleepier and more confused. Treatments are no longer working as well as before, and everyday activities are becoming more and more burdensome. In a sense, life is disappearing. Consult with your physician; ask for clarity on the prognosis, or likely course of the illness or stages of dying.
Closer to death, there may be dramatic changes in the dying person's moods, behaviors, desire to take food or water, and capacity to verbalize wishes. All of this may be a normal part of his or her letting go. At this time, safety and comfort care are of utmost concern.
Second, talk with people you trust. Discuss the situation with the family members and friends who seem to be able to see things as they are. You might also talk with people who are not personally involved. Most importantly, consider what the dying person has expressed or you know to be his or her desires.
Third, listen to your heart. Try to see beyond your fears and wishes, to what love and caring are saying to you. What is really best for the one who is dying, and for the others around? Given that death is unavoidable, what is the kindest thing to do? It might be holding on. It might be letting go.
RED OR D
End-of-Life Decision-Making: An Overview
Americans are a people who plan. We plan everything: our schedules, our careers and work projects, our weddings and vacations, our retirements. Many of us plan for the disposition of our estates after we die. The one area that most of us avoid planning is the end of our life. Yet, if we don't plan, if we don't at least think about it and share our ideas with those we love, others take over at the very time when we are most vulnerable, most in need of understanding and comfort, and most longing for dignity.
Big issues confront us when we think about our own death or that of someone we love. Our attitudes and beliefs about religion, pain, suffering, loss of consciousness, and leaving behind those we love come into play. We can let things unfold as they may, and for some of us that's exactly right. For others of us, it is good to plan.
This Fact Sheet is not intended to provide a comprehensive planning tool. It outlines areas we need to think about and resources that can help, whether we are caring for someone who is already incapacitated, or making decisions for ourselves.
How to Begin
Begin simply with yourself. Try to confront and understand any fears you might have: do they relate to the possibility of pain? Loss of dignity while undergoing treatment? Not being clearly understood by those around you? Being alone? Being overly-sedated or in a lingering state of unconsciousness? Leaving loved ones or unfinished projects behind? Leaving your loved ones without adequate financial resources? Dying in a strange place?
Once you know that you want to explore these topics and make some plans, most experts suggest that you begin by talking. Talk openly to family and friends about your values and beliefs, your hopes and fears about the end stage of your life and theirs. Someone who is uncomfortable with the subject can be led to talk with indirect topics. Use "openings" in conversations, such as recalling a family event and talking about a future event where you might not be present. Talk about whom you wish to leave a possession to, whom you'd like to have near if you were seriously ill.
Ask your doctor for a time when you can go over your ideas and questions about end-of-life treatment and medical decisions. Tell him or her you want guidance in preparing advance directives. If you are already ill, ask your doctor what you might expect to happen when you begin to feel worse. Let him or her know how much information you wish to receive about your illness, prognosis, care options, and hospice programs.
Discuss with your lawyer and/or financial adviser whether your legal and financial affairs are in order. Talk to a religious adviser about spiritual concerns.
What do you need to talk about?
Specific issues relate to the end of one's life. They include:
- Whom do you want to make decisions for you if you are not able to make your own, both on financial matters and health care decisions? The same person may not be right for both.
- What medical treatments and care are acceptable to you? Are there some that you fear?
- Do you wish to be resuscitated if you stop breathing and/or your heart stops?
- Do you want to be hospitalized or stay at home, or somewhere else, if you are seriously or terminally ill?
- How will your care be paid for? Do you have adequate insurance? What might you have overlooked that will be costly at a time when your loved ones are distracted by grieving over your condition or death?
- What actually happens when a person dies? Do you want to know more about what might happen? Will your loved ones be prepared for the decisions they may have to make?
Taking Control
Financial Decisions
Sometimes the easiest place to begin taking control of planning is in your estate and finances because the content is more concrete. Make sure you have a valid, up-to-date will, or trust documents if desired or needed. A durable power of attorney for financial affairs is a legally binding document that you prepare, or have prepared for you to sign, that designates a trusted person to act for you if you become incapacitated. A lawyer should help you complete these documents.
Keep all your insurance information (medical, long-term care, life and special needs policies) in an accessible place. Tell a trusted person where these documents are located. You should also think about, and write out, instructions for your funeral, burial or cremation preferences, and how they will be paid for.
Medical Decisions
Medical advances make it possible to keep a person alive who, in former times, would have died more quickly from the serious nature of their illness, injury or infection. This has set the stage for ethical and legal controversy about the patient's rights, the family's rights and the medical profession's proper role. To complicate matters further, the state also has an interest in protecting its citizens from harm.
Each American has the constitutional right, established by a Supreme Court decision, to request that medical treatment be withdrawn or withheld. The right remains valid even if you become incapacitated. Another aspect of end-of-life decision-making is the right to insist on receiving, rather than refusing, treatment. This issue relates to "medical futility," when medical personnel deem further treatment to be useless except if in the nature of comfort or palliative care.
To begin, understand that you have the right to make your own decisions about your care. You can also appoint an "agent" to be your proxy or surrogate should you become incapacitated. In the event you become legally incapacitated (which may require involvement of both medical experts and a court of law) very specific legal steps must be followed before decisions about your care are made.
Care Options
Most people do not die traumatically. Instead, the last days of their lives are spent in a hospital, nursing home, or in their own home. In your advance directive (see below), you can state your preferences about where you wish to be in the event of terminal illness or during the process of dying. If you choose to be at home, many home care options are available, including home health and custodial care.
Advance Directives
Advance directives are written instructions which communicate your wishes about the care and treatment you want to receive if you reach the point where you can no longer speak for yourself. Medicare and Medicaid require that health care facilities that receive payments from them provide patients with written information concerning the right to accept or refuse treatment and to prepare advance directives. Every state now recognizes advance directives, but the laws governing directives vary from state to state.
Probably the most commonly used form of advance directive is the durable power of attorney for health care. A more limited type of advance directive is the living will. There are important differences between these two documents.
- The durable power of attorney for health care (also called the "medical power of attorney") names someone (a relative or friend) to make medical decisions for you when you are not able. Depending on the state where you live, the person you designate is called an agent, attorney-in-fact, proxy, or surrogate. (California uses the first two terms.) A durable power of attorney deals with all medical decisions unless you decide to limit it. You can also give specific instructions about treatments you want or don't want, or about other issues that concern you. For example, your agent will have access to your medical records unless you limit this right.
Because a durable power of attorney is a legal document, special forms are available and the power of attorney must be signed to be valid. Some states require witnesses and have specific rules about who can witness. It is important to select a proxy who knows you well and whom you trust. You should also name a backup proxy in case the first person is unavailable. A relative or friend can be your proxy, but an attending physician or hospital staff person usually cannot be.
The agent will be able to make all decisions regarding your health care, from flu shots to the need for surgery. And your agent or proxy can decide whether to withdraw or withhold life-sustaining procedures. While you can be as specific as you wish in the guidelines you give in the document, remember that your agent must also have the flexibility to make decisions in changing circumstances.
- The living will, in some states called "instructions," "directive to physicians," or "declaration," states your desires regarding life-sustaining or life-prolonging medical treatment. These instructions generally apply to specific circumstances that may arise near the end of your life, such as prolonged unconsciousness. They do not appoint a surrogate to make decisions for you. Most states include these types of instructions in their medical durable power of attorney forms. Not all states recognize separate living wills as legally binding; California does not.
California's new Health Care Decisions law, effective July 1, 2000, combines the durable power of attorney for health care and the instructions for health care decisions into one form called the Advance Health Care Directives. New forms are available from several agencies and web sites. Older forms, executed before July 1, 2000, are still valid, however. Note that the durable power of attorney for health care does not authorize anyone to make legal or financial decisions for you. That is done through a separate financial durable power of attorney, as discussed above under "Taking Control - Financial Decisions."
Other forms or methods of instruction may also be available to you, including:
- A Do Not Resuscitate or DNR order, which instructs medical personnel, including emergency medical personnel, not to use resuscitative measures.
- A preferred intensity of care document, a form for your physician that outlines your preferences for care under special circumstances.
Why would I want to prepare an advance directive?
It is wise to prepare an advance directive so that medical personnel and your loved ones will know what care and services you prefer and what treatment you would refuse, in the event that you are unable communicate your wishes. You also can designate the person or more than one person who you would like to make decisions on your behalf. In a surprising number of families, there is disagreement over what a very ill relative would prefer. The advance directive makes your wishes clear.
What is the care or treatments covered by advance directives?
Most advance directives cover life-sustaining treatment such as artificial feeding, mechanical ventilators, resuscitation, defibrillation, antibiotics, dialysis and other invasive procedures.
You can give broad or specific instructions for care providers for each type of circumstance or treatment. For example, you can state that you do not want life-prolonging treatments if you will never recover your physical and mental health to live without constant care and supervision. Or you can state that you want your life prolonged as long as possible. You can address what you wish to occur in the event of trauma, a prolonged state of unconsciousness, a diagnosis of dementia, and so on.
You can also state that you wish to receive only palliative or comfort care. Such care is designed to manage terminal symptoms, including pain. It is important to understand these terms before making decisions about your preferences. Your surrogate should also become informed about the difference between comfort care and life-sustaining treatments. Health professionals and family members may disagree on the nature of a particular treatment. For example, a relative may become alarmed to see that fluids are being administered and think that this will extend life against the patient's wishes. However, the physician might believe fluids are making the dying person more comfortable and are appropriate palliative care. Another example could be the temporary need for a ventilator (mechanical breathing apparatus) and antibiotics following routine surgery.
Pain alleviation or management is among the most controversial end-of-life topics. Because of ethical concerns and the confusion over laws regulating drug addiction, Congress is debating the role of habit-forming and potentially lethal drugs in the management of pain and discomfort at the end of life. Studies have found that addiction among seriously ill people is rarer than once thought. Some individuals, however, fear being over-sedated at the very time when they want and need to recognize and interact with others.
Before making decisions about these treatments they should be discussed with a well-informed health professional. You can also ask what to expect during the last days and hours of your life, and what your surrogate and other loved ones should expect.
What other decisions can my proxy make?
Depending on where you live and your written instructions, your proxy or agent can be authorized to decide where you will die (at home or in a facility), and can arrange for autopsy, organ donation, disposition of remains, and funeral or memorial plans.
Whom should I select to be my proxy or agent?
Choose a responsible person to be your surrogate who shares your values and beliefs about medical care and dying. You must also make sure that the person is willing to take on this responsibility before you name her or him in the directive. An alternate should also be selected (and informed of your choice). Some states do not allow certain people, such as health care providers or health facility operators, to serve as agents. Remember also that the person you select to be your surrogate does not have to be the same person who oversees your financial affairs.
Can someone take over making decisions before I'm ready?
Though laws vary by state, most states ensure that you remain in charge of your care as long as you are able. Usually laws are in place that require at least two physicians to declare you to be incapacitated. Agents/proxies are not allowed to commit you to a mental institution or to consent for experimental mental health research, psychosurgery or electroconvulsive treatment. Your proxy may not deny comfort measures for you.
Can a medical professional refuse to observe my wishes?
A health care provider may refuse to observe your stated wishes or the decisions of your agent because of conscience or the institution's policies or standards. The provider must inform you or your surrogate immediately and transfer to another provider should be arranged.
Advance directives must be reviewed periodically and kept current. Keep the original and give copies of the signed documents to your proxy/agent (including alternates), your physician, and your hospital. Put a card or notation in your wallet or purse stating that you have an advance directive. You may also leave a copy with your lawyer. Some people take their directives with them when they travel. If you spend extended time in another state you should also complete advance directives there, using that state's forms and rules. Advance directives remain in effect until they are revoked. Any written change you make on a directive may invalidate it, so consult with a professional or hospital if you wish to make changes.
Where to get forms and instructions
A local hospital, Long-Term Care Ombudsman program, senior legal service or senior information and referral program, a local or state medical society, or your physician usually have forms appropriate for your state. Some medical centers offer classes in preparing directives. Attorneys may also draft their own forms. Compassion & Choices (formerly Compassion In Dying) has forms and instructions that can be downloaded from its web sites www.compassionindying.org/
What if I don't sign an advance directive?
Someone has to make decisions when an ill person cannot. Without directives in the person's medical or hospital files, and without the appointment of a surrogate through the durable power of attorney, your doctors, hospital staff and loved ones will do the best they can. To your spouse or child or life-long friend, this might mean struggling with what they think you would want. To the medical staff, it means letting their training and professional experience guide them. Unfortunately, in a world of good intentions, that training has traditionally led health care professionals to do all they can to keep you alive. Recent laws are making it easier for these able professionals to find the best ways to make you comfortable. But the ways all these wonderful people employ may not be what you want. Eventually, of course, a conservator (or guardian) could be appointed by a court. A public agency can request designation of a conservator and, if your family cannot be located, the conservator may be a public agency.
What if I can't sign a directive: What to do when someone is already incapacitated?
What if you don't have a chance to plan for your own or a loved one's death? What if you are responsible for a person who has suffered a severe stroke, is already in late-stage dementia, or becomes severely disabled from a traumatic brain injury? Laws and programs exist for these situations, too.
If the impairment is gradual, it may be possible to employ many planning measures already discussed. This depends on the degree of impairment the person has experienced and their legal ability to sign documents. If the impairment or incapacity is sudden and permanent, it is imperative that the responsible person: spouse, child, grandchild, a favorite niece or nephew, long-time friend or companion or other individual, seek guidance quickly from an attorney, hospital social work staff, and accountant or financial planner. The person's own physician as well as the hospital medical personnel should also be consulted. Several legal mechanisms are available, the most common being the conservatorship.
Questions to ask if you are responsible for an incapacitated person include:
- What is the prognosis?
- Has the person prepared and signed advance directives?
- Who would the person most want to take responsibility?
- Would he or she want that responsibility shared, perhaps among more than one adult child?
- Does the hospital provide an ethics committee or other staff that can help you sort through options for care decisions?
- What are the person's financial assets?
- Do they have Medicare, medical or long-term care insurance or other specialized insurance plans for hospital or illness coverage?
- Are they eligible for Medicaid?
Some aspects of an incapacitated person’s financial affairs could be handled through joint tenancy of property, community property (husband and wife) provisions, and representative payees. Joint tenancy is the registration of various assets, such as real estate or bank accounts, in the names of two or more joint tenants. Potential problems include the ability of one joint tenant to withdraw money from a jointly held account without the other's knowledge and possible adverse tax and estate planning consequences. While a spouse can manage the community property owned with an incapacitated spouse, court approval may be required for transactions including sales of real property, borrowing money, signing leases or giving gifts of property. Also, many states do not have community property laws. A representative payee can be named for a person who receives only governmental benefits, such as Social Security or SSI. The payee, who can be a trustworthy relative, friend or professional, manages the person's funds. The most effective means of handling an incapacitated person’s affairs is the conservatorship or guardianship.
Mental illness or developmental disability
If the person for whom decisions must be made has a mental illness or developmental disability, various federal and state laws apply. No one can be committed to a mental institution, for example, without specific legal proceedings.
A special model for dementia
A study published in the Journal of the American Medical Association (July, 2000) reported that doctors often fail to acknowledge the final stages of Alzheimer's disease and other forms of dementia as a terminal illness. This can mean that patients are subjected to invasive procedures rather than comfort care. One problem area discussed in the study is the administration of pain medication to dementia patients. The study found that less pain relief is often prescribed for dementia patients than may be needed because the patient is unable to communicate the presence of pain. Treatment models developed for dementia patients suggest hospice and comfort care, rather than life-prolonging treatments, might be more appropriate in the end-stages of the disease. This would mean that in the event of a hip fracture, pneumonia, localized infection or other treatable condition, treatments might be withheld in favor of medications and methods that bring comfort and ease.
There is much that we can plan and attend to in advance of our own death. We can make our wishes known about where we want to be, who we want to be with and what we want to happen to us and around us. We can set up ways to pay the costs of care and even pay for our own funeral. But financial and legal planning and medical advance directives must be made with the knowledge that someday other people will have to implement our wishes and live with the results. For that reason our plans should, when possible, allow for flexibility and trust in the discretion of our surrogates.
I I found a really great article that goes perfectly with this discussion tonight and offers tips for families that are dealing with end-of-life care and decision-making.
Five Tips for Families Facing End-of-Life Care
Here are some tips for making end-of-life care easier to handle:
Keep communication open. Have “the conversation” early. Make sure family members designate who they want as their health care agent if they cannot make medical decisions on their own and need someone to speak on their behalf. “The last place you want to have a conversation about who will take over as a health care agent is in an emergency,” says Paul Malley, president of Aging With Dignity, a Florida-based advocacy group for terminally ill patients. “This can be the adult child or the parent’s best friend perhaps. There needs to be a conversation about everything from what medical treatments the loved one wants to how they feel about life support. The fewer surprises the better.”
Malley recommends opening the conversation to the entire family. “So often when parents are older or have a serious diagnosis, we put them in the hot seat and say, ‘O.K., Mom and Dad, here are a list of questions you need to answer.’ Instead, bring the whole family together. Even college kids can tell their families what they want in an emergency. That way the whole family can think back and remember everyone’s wishes,” he says.
Involve your doctor. “I think it’s really important that when these medical decisions are made, the family and the doctor are present,” says Carol Levine, director of the Families and Healthcare Project at United Hospital Fund. “Not all doctors are comfortable talking about end-of-life kinds of issues.” Involving the doctor in conversations about emergency care can alleviate tension when treatment options are discussed.
Get it in writing. “It’s not enough to just have a conversation once and not talk about it again and it’s also not enough to fill out legal documents and never discuss wishes with family members,” says Malley. “Both need to be done.”
Aging with Dignity has created “Five Wishes,” a living will that is legal in 42 states and has been translated in 26 languages. The document allows families to let care providers know who they want to make health-care decisions, what medical treatments they want or don’t want, and what they want loved ones to know.
Here are some other documents the National Institute on Aging recommends for everyone:
- Living will: records a person’s wishes for medical treatment near the end of life
- Durable power of attorney for health care: designates a person, sometimes called an agent or proxy, to make health care decisions when the person can no longer do so
- Do-not-resuscitate (DNR) order: instructs health care professionals not to perform cardiopulmonary resuscitation if a person’s heart stops or if he or she stops breathing. A DNR order is signed by a doctor and put in a person’s medical chart
- Will: indicates how a person’s assets and estate will be distributed upon death
- Durable power of attorney for finances: names someone to make financial decisions when the person no longer can. It can help terminally ill people and their families avoid court actions that may take away control of financial affairs
- Living trust: provides instructions about the person’s estate and appoints someone, often referred to as the trustee, to hold the title to property and funds for the beneficiaries. The trustee follows these instructions after the person can no longer manage his or her affairs
Another document to consider is a physician orders for life-sustaining treatment (POLST) form. It details what the patient wants in terms of medical treatment including CPR, feeding tubes and medical interventions if the patient is not breathing or is without a pulse. The form is signed by both the physician and health proxy. Not every state has a POLST program
“Doctors feel compelled to treat, no matter what, most of the time,” says Carolyn Rosenblatt, founder of AgingParents.com, a resource for people caring for aging loved ones. ”They are also afraid of getting sued for ‘hastening death.’ The form protects them by giving them immunity. One would hope that they could then go about decision making with more common sense.”
Recognize that you might not be the best person to take over. “The person who becomes the health care proxy needs to be comfortable with that,” says Levine. “Being that person means making very hard decisions at a certain point. It is better to know if you can handle it ahead of time so someone else can take on the role if need be.” Experts recommend siblings also talk to one another early about how to divide responsibilities to avoid conflict later.
Talk about hospice care early. Hospice care provides medical treatment, emotional support and spiritual resources for people who are in the last stages of a terminal illness. “I often see people who get into hospice care and wonder why they didn’t hear about it sooner,” says Davis. In many cases, that may be because people see hospice as “giving up” — though, actually, people who receive palliative care at the end of life may live longer than those who continue with aggressive, life-saving interventions. Also, hospice can be a difficult topic for doctors to bring up to their patients.
Davis recommends talking about hospice care with your family early; in order have care for the longest time possible. Hospice is a Medicare program and many state Medicaid plans and private health insurance plans pay for it as well. “Talk about it early because although we all see ourselves dying in old age, it’s healthier to bring it up just in case. That way, it can be about your own personal wishes as well as the wishes of your loved one,” says Davis.
CPR & DNR: Things to Consider
Introduction
Big issues—and big decisions—confront us when we think about the imminent death of a terminally ill loved one in our care. Among the emotional, legal and financial considerations are also questions regarding the type of medical assistance your loved one should receive as their illness advances. For example, if your loved one suddenly has difficulty breathing, will you allow a paramedic or an emergency room technician to administer CPR? And if CPR revives your loved one, yet he or she still can no longer breathe on his or her own, should you allow a machine—a respirator—to breathe for him or her?
CPR (Cardiopulmonary Resuscitation)
Consider the following scenario:
Nancy's husband has had Alzheimer's disease for eight years, and is now in the final stages of the illness. After a discussion of end-of-life issues with her family, Nancy has decided to "let nature take its course" if anything of an urgent medical nature happens to her husband. In other words, she does not want him to be put on life support. She has told her doctor of this decision, and he has concurred.
One night, Nancy wakes up to find her husband having trouble breathing. Reflexively, without thinking, she calls 911. By the time the paramedics arrive, her husband has stopped breathing completely. The paramedics leap to do their job: they immediately administer CPR and take him to the hospital. By the time Nancy arrives at the hospital, her husband is connected to a ventilator and numerous IVs. Unfortunately, this is exactly what she did not want for him.
Definition
Fully understanding Nancy's scenario requires a deeper understanding of cardiopulmonary resuscitation. Simply put, CPR is the process of restarting the heartbeat and breathing after one or both has stopped. The first step involves creating an artificial heartbeat by pushing on the chest, and attempting to restore breathing by blowing into the person's mouth. A medical professional will then insert a tube through the mouth and down the airway to make the artificial breathing more efficient. Electric shocks may be given to the heart, and various drugs may be given through an intravenous line. If the heartbeat starts again but breathing is still not adequate, a machine called a ventilator may be employed to move air in and out of the person's lungs indefinitely.
On television, CPR is often depicted as the ultimate life-saving technique. However, television does not show this process quite accurately—in real life the process is more brutal. Pushing the center of the chest down about one and one-half inches, 100 times a minute for several minutes, causes pain, and may even break ribs, damage the liver, or create other significant problems. CPR produces a barely adequate heartbeat, and doing it more gently is not sufficient to circulate enough blood. Electric shocks and a tube in the throat are also harsh treatments, but may be essential to resuscitate someone.
CPR frequently can save a person's life, particularly in the case of some kinds of heart attacks and accidents an otherwise healthy person may experience. CPR is also most successful when the failure of heartbeat and breathing occurs in the hospital, in the Cardiac Care Unit (CCU). Nurses in the unit will instantly recognize the problem and begin sophisticated care.
However, when a person is in failing health from a serious and progressive illness, the heart and breathing will ultimately fail as a result of that illness. In such a circumstance, there is little chance that CPR will succeed at all. Any success will be temporary at best, because the person's weakened condition will soon cause the heartbeat and breathing to fail again.
Another possibility is that CPR may be only partially successful. If the heartbeat is restored but a person is still too weak to breathe on his or her own and remains too weak to do so, he or she may be on a ventilator for days, weeks, months or longer. Moreover, when breathing or heartbeat fails, the brain is rapidly deprived of oxygen. As a result, within seconds, the brain begins to fail (one loses consciousness), and within a very few minutes permanent damage to the brain occurs. If it takes more than those very few minutes to start effective CPR, the person will not fully recover. The brain damage may mean anything from some mental slowing and loss of memory to complete and permanent unconsciousness and dependency on a ventilator and sophisticated medical life support.
The Role of Emergency Help (Calling 911)
A call to 911 is a request for emergency help; the goal of those who respond to 911 calls is to protect life and property, and the people who respond expect to go to work doing what they are trained to do to accomplish that goal. If your house is on fire, the firefighters don't ask for permission to cut a hole in your roof and spray water all over your living room—they just do what is necessary to stop the fire from destroying your home.
Similarly, when a person's heartbeat and breathing have failed, the 911 responders are not prepared to have a long talk with you about the person's condition and what you think might be best to do. They know that any delay could mean brain damage, so they immediately start CPR and then take the person to the hospital. With one exception, which we will discuss in the next section, their rules require this, and it makes sense if you think about the purpose of the 911 system.
When Nancy called 911 in our scenario, the paramedics simply did what they are trained to do—they revived her husband. However, if Nancy and her doctor had completed a DNR form and kept it in the home, her husband would not have been resuscitated and/or connected to machines when he got to the hospital.
The Do Not Resuscitate (DNR) Form
The "Emergency Medical Systems Prehospital Do Not Resuscitate (DNR) Form" is a legal document that gives the 911 responders permission not to perform CPR. The DNR form is prepared in advance of any situation and kept at home. This prehospital DNR form lists the name of the person to whom it applies, and is signed by that person (or whoever represents that person if he or she is too ill to make medical decisions on his or her own behalf). It is also signed by the person's doctor. Please note this is very important: the form is not valid until the doctor signs it, as it is a medical order. There is a new form which can replace or be a supplement to the traditional DNR order called a POLST (Physician Orders for Life Sustaining Treatment).
The DNR or POLST is the only form that affects 911 responders; other documents, such as a Durable Power of Attorney for Health Care or some other Advanced Directives, do not. If emergency personnel arrive to find a person whose heartbeat and breathing have failed or are failing, they will perform CPR unless they see a correctly completed DNR/POLST.
In light of this, the DNR/POLST form should be kept near the ill person's bed, perhaps on the wall, so it will be easy to find in case of emergency. When 911 responders see this form, they will still do anything they can to make the sick person comfortable, but they will not perform CPR. In the absence of a DNR/POLST form, they must do CPR. The DNR/POLST is the only form that gives you control over what they may do. (Note: A DNR may be reversed if you so desire.)
Choices
Why would one choose to prepare a DNR? Because there are times when it may not make sense to perform CPR. As an illness progresses, there usually comes a time when continued treatment will no longer reduce symptoms nor heal the person and he/she is in an end stage of the disease. (When a person is becoming more and more sick, doctors may try various treatments to stop the illness, but eventually it may become clear that treatments are not having the desired effect. Other treatments might provide comfort, and might even partly control the disease, but a point may be reached where nothing will stop the person's decline.) Under these circumstances, you might feel there is little reason to attempt CPR, as it (At this point, CPR) may only prolong dying. This allows natural death to occur. In fact, the original name of the DNR form was "DNAR" for "Do Not Attempt Resuscitation." This name recognized the fact that the form instructed the 911 responders not to undertake something that, despite the best efforts, would not work effectively in the long run. At most, the effort might put the sick person in the hospital, in pain and distress, for the last days of his or her life. Having a DNR prepared may also relieve the caregiver of making a decision to turn off a machine, which can be an even more difficult decision psychologically.
Conclusion
When someone is suffering from a chronic illness, as opposed to an acute illness (the kind that usually requires a hospital visit or stay), the decline is often gradual. As a result, both caregivers and those in their care often forget to talk about the choices the chronically ill person would like to make regarding his or her health care. If you decide that you do not want CPR and are concerned about this decision, it might help to talk with your physician and clergyperson. It is normal, instinctive, to try to save life no matter what, and some people are concerned that not doing everything possible to preserve life is the same as "killing" someone. But it can also simply mean respecting the end stage of a disease as the body shuts down and death naturally occurs.
There are no right and wrong answers to these questions, and until we face a situation like this, it is difficult to anticipate the kinds of choices we'd make. As we change throughout the course of an illness, our choices might also change. However, the more thoroughly family members have discussed these issues in advance of the need to make a critical decision, the easier it will be on both the person who is ill and those responsible for that person's care. It is never too soon to start the conversation. Hospice care can relieve suffering and provide support to patients and families facing these crises.
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