Care For PA

Most people don't want to talk or think about end-of-life care. But with medical science and technology able to extend both the length and quality of life, conversations and decisions about end-of-life care are more important than ever. By thinking about and sharing your thoughts on end-of-life care, you can better assure that you and your family members' wishes at the end of life are met.

During the second half of the 20th century, new science and technology began offering the potential of medical therapies previously unknown. Where once physicians could provide only comfort in the face of serious illness, the modern health care system can now fight aggressively against illness and death. We frequently attempt to prolong life at all cost, and we often succeed.

But death has not been conquered--all of us will die. A few of us (less than 10 percent) will die suddenly of a heart attack, an accident, or another unexpected event. Most of us will experience some kind of terminal illness, such as cancer, or we will experience a slow decline stemming from one or more chronic problems, such as heart failure, diabetes, or Alzheimer's disease.

As we imagine our own future and death, or the death of a close family member, our fears and fantasies driven by past experiences and media dramatization can raise anxiety about the events that may occur. Patients and families worry that symptoms won't be managed, and that they will lose function and control. They wonder who will provide care, how they will pay for it, what dying will be like, and what comes afterward. Many worry about being a burden on family and friends.

As with many issues, advance thought and preparation can help ease anxiety.

Advance Planning

Advance care planning is a process, not a single event or decision. During this process, you should explore, discuss, articulate, and document your preferences. This process helps you identify and clarify your personal values and goals about health and medical treatment. You can identify the care you would like, or not like, to receive in various situations. You also can determine whom you would like to make health care decisions on your behalf in the event you cannot make decisions yourself.

Your family and physicians should be involved in this process. Your physicians can discuss various clinical scenarios with you, as well as the benefits and drawbacks of various treatment options. They also will need to know whom you choose to make decisions for you in the event that you are not able to make decisions yourself.

Legal Documents to Help

Several legal documents can assist you in this process. These documents generally are called advance directives and they may be available through your doctor, hospital, or from local groups such as the offices of the AARP or the local Bar Association.

• A Living Will is a document in which you can specify your desire for care. For instance, in a living will, you can say whether or not you want a feeding tube if you are unable to eat, if you want to be put on a ventilator if you can't breathe on your own, or if you want to be resuscitated if your heart stops. A living will goes into effect only if you are unconscious or if your doctor determines you are not able to make medical decisions.
• A Power of Attorney for Health Care Decisions is a document in which you can say who will make decisions about your care if you are unable. The person you authorize to make decisions for you is often called your "agent�? or your "proxy.�?

When selecting an agent or proxy:

• Select someone whom you trust and who understands your decisions.
• Be certain that the person you ask to be your agent is willing to act on your behalf and is not afraid to ask questions, seek assistance, and speak up.
• Talk about and clarify your wishes regarding end-of-life care with your agent. Even family members and friends may not know what you want or do not want. As hard as they may be, these conversations also will make the decision-making process easier on your agent.

Once you have completed and signed any advance directive:

• Keep the originals in a secure place.
• Give copies to your agent, any alternate agents, and your family.
• Give copies to your doctors to place in your medical record.
• Take copies to the hospital whenever you go there for either inpatient or outpatient care.

Pain Management

A common concern in considering end-of-life care is the fear of pain and suffering. In most cases, pain--even severe pain--can be managed through medical or non-medical means. Medical means of managing pain include medications, surgery, and nerve blocks. Non-medical means of managing pain include relaxation therapies, biofeedback, massage, and acupuncture.

If you are in pain, be sure to tell your doctor and caregivers. You should be prepared to answer questions such as:

• Where does it hurt most?
• How long have you had this pain?
• Did it begin gradually or all of a sudden?
• Does it come and go, or do you have it all the time?
• How would you describe the pain?
• Does it feel better when you're in a certain position?
• To what extent does the pain interfere with your normal activities, such as sleeping and walking?
• What have you been doing about the pain?

You also should discuss with your doctor what side effects you may experience from any pain medication or pain-relief measures you might use.

Depression and Anxiety

Depression and anxiety are among the most prevalent and most under-diagnosed symptoms in patients facing the end of life. It is normal to feel fear, anger, grief, and instability. Some people may withdraw or become especially quiet. Most people move between a range of emotions and not always in a predictable order. Emotions come in surprising waves and can be persistent.

Unresolved issues in personal matters, and especially in relationships, also are a common experience. Before you get too sick, consider if there is something you want to do, people you want to talk to, or places you want to go.

Another major issue tends to be loss of control, such as a growing inability to feed, bathe, dress, and go to the bathroom yourself. Visiting nurses and home care aides can help with these tasks. Many communities also have transportation services and meals on wheels programs.

Make sure you have answers to all of your medical questions. Let your doctor know if you need more or less information. Share what you are expecting or hoping for, so your doctor can help you achieve those expectations and hopes, if possible. Remember that you can always change your mind. Just be sure to discuss your new wishes with your doctor, agent, family, friends, and clergy. Your doctor also can help you tell your family and friends any bad news.

Talk with your doctor and family about any financial concerns you have. Patients often receive medical bills that they do not understand and cannot pay. Your doctor may know of programs sponsored by pharmaceutical companies or hospitals that can assist you in paying for your medicines and health care.

You also might consider talking with your clergy or someone from your church. Spiritual advisors can help you answer questions, such as how to make sense of what is happening to you.

Finding Meaning and Value

The ultimate goal of end-of-life care and planning is to help you and your family find meaning and value as you close your lives together. With planning and open discussion, the last hours can lead to significant personal and family growth.

Other Things to Think About

As part of your planning process, you also should think about several other things.

• Where do you want to be cared for? While spending your last days at home may be the wish of many patients, it may not be the best choice for you and your family. Your decision will depend on such factors as the resources available in your community, the accommodations in your home, and the availability and capability of family to take care of you.
• Whom do you want to take care of you? Are family members available and able to care for you? Do they want to assume this responsibility?
• What are your options financially? What will your health insurance or long-term care insurance cover? Do you qualify for government assistance, such as Medicare, Medicaid, or veterans care?
• Who will raise your children, if you still have children at home? How will you prepare for your children's future? It may be wise to consult a lawyer in addressing guardianship issues. Do you have other dependents to consider? Or pets?
• What do you want done with your money, your house, and your other possessions? If you haven't written a last will and testament, you should do so now with the help of an attorney.
• What religious rituals are important to you? What kind of memorial service do you want? Do you want to be buried or cremated? You might consider discussing your wishes with your clergy or a funeral director.

You also might consider pre-paying for your service and burial or cremation. In addition, you might consider purchasing a burial plot and marker.

• Do you want to join clinical trials on medications and devices that are not yet proven safe and effective, but may provide some improvement in your condition?
• Do you want to be an organ donor? Do you want your body or organs to be available for medical research or education? Would you want an autopsy?

Once you have considered and answered these questions, be sure to discuss your wishes with your agent, family, friends, caregivers, clergy, and doctors. It may be helpful to make a list before you begin these conversations to ensure you don't forget any important items that may eventually affect the decision you or they make.

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