Talk to Your Loved Ones about End-of-Life Care

It’s up to you to take the initiative and express your end-of-life wishes. Your loved ones are not likely to raise the issue for you because discussing end-of-life concerns can be difficult. Sometimes sharing your personal apprehensions and values, spiritual beliefs or views about what makes life worth living can be as helpful as talking about specific treatments and circumstances.

Tell your family how important it is to be physically independent and to remain in your own home. Independence can be extremely important to some and is less so to others. Express aspects of your life that give you the most meaning. This way your loved ones can do their best to make sure these things are still available to you even at the end of life. Make sure they know how important it is for you to be able to recognize people and interact with them. Give specific examples of how this impacts your quality of life.

Talk about particular concerns about death and how your religious/spiritual beliefs affect your attitude towards dying. Let them know if you want your health care agent to take into account the effect your illness has had on your family and friends. Discuss financial concerns dealing with decisions about your treatment and if you would prefer to die at home if possible.

Make sure you reassess all your decisions over time. There are no simple questions and your views may change. It is important to review these issues and discuss your choices as your personal health and circumstances may change throughout your life.

Talk to Your Health Care Agent about End-of-Life Care

Your health care agent needs to know about the quality of life that is important to you and when/how aggressively you would want medical treatments provided. Talking to your agent means discussing values and quality-of-life issues as well as treatments and medical situations. Because situations can occur that you might not anticipate, your agent may need to base a decision on what he or she knows about your values and views to determine what makes life worth living.

Tell your agent how you want to be treated at the end or your life. Give examples of treatments you want to receive and the ones you don’t. Talk about the situations you are afraid might happen if you can’t make decisions for yourself. Reiterate any particular fears or concerns about medical treatments you might receive and under what circumstances you would like them administered.

Discuss your views on issues such as aggressive treatments (for example mechanical ventilation or antibiotics), artificial nutrition, hydration and CPR if your heart stops. Also, make your views known on what kinds of treatments you would want administered if you are not expected to recover.

Continue to discuss these issues with your doctor as time progresses. Certain situations may change and the clearer you are about your wishes, the easier it is for those around you to carry them out. You need to talk to your agent in depth and over time. 

How to Manage Your Pain

(From “Caring Connections” website sponsored by the National Hospice and Palliative Care Organization)       
There are many treatment methods that can help reduce and manage your pain. Most pain can improve with treatment that usually consists of a combination of medicine and other strategies. It is crucial to talk to your doctor about your pain so they can provide the help you need to feel better. Pain associated with a terminal illness requires special treatment and can best be treated by a palliative care or hospice provider.

Taking action to manage your pain will not only benefit you, but also everyone around you. Ask for help from those closest to you if your pain makes it difficult to do chores or other tasks. Your pain and worrying about you, can take a toll on your loved ones. They too can experience worry, depression and exhaustion in response to your pain. Just as you may need their support, they need yours as well. The best thing you can do for them is to take care of yourself, your emotions and your pain.

 There are healthy ways to deal with the emotions you may face while living with pain. Dealing with chronic pain can take a toll on your mood, outlook, relationships and self-image. In addition to seeking medical help, it may be important to seek extra help from a psychiatrist, psychotherapist, social workers or chaplains. By getting additional emotional and spiritual support, you will learn new skills to become more efficient at managing your pain.
 
Some people decide to live with pain for cultural, spiritual or other personal reasons. Some people believe they must suffer through pain to atone for sins, others feel that tolerating pain is a sign of courage and bravery. Whatever your beliefs are, you have a right to have your wishes honored.

Side Effects of Pain Medications

(From “Caring Connections” website sponsored by the National Hospice and Palliative Care Organization)       
Pain medication can cause side effects, including grogginess, nausea or constipation. You may decide you would rather live with a little pain, than experience side effects. Many of the side effects you will experience will go away or lessen over time as your body becomes use to the medication. It is important to let your health care provider know if you have any problems taking your medicine so they can find ways to help manage the side effects.

Something you may want to consider is to schedule visits from family, friends and health care providers at the times you are feeling “at your best.” If your pain is worse in the morning, ask people to visit in the afternoon. If you feel tired shortly after taking pain medicine, ask people to come by a few hours later. Make sure you’re taking care of yourself. Your loved ones will understand as long as you communicate what you need to them.

How to Talk to Your Doctor about Pain

(From “Caring Connections” website sponsored by the National Hospice and Palliative Care Organization)   
Most health care professionals will ask you to rate your current pain level on a scale of 0-10, where 0 is no pain and 10 is the worst pain imaginable. They may also ask what your pain goal is, again on a scale of 0-10. Tell your physician if your goal is to get rid of your pain, or if you can/chose to bear some pain. Be sure your physician and caregivers are clear about your pain goal.

Since pain tends to be under treated, make sure your doctor knows if you have a pain problem. You can help the doctor prescribe the most effective treatment plan as long as you are honest about how you are feeling.

Resources

Caring Connections is a program sponsored by the National Hospice and Palliative Care Organization (NHPCO) that provides free information and resources that address end of life care. Caring connections helps people make planned decisions before a crisis occurs to help relieve some of the burden end of life issues present. For more information please call their helpline at (800) 658-8898 or visit www.caringinfo.org .