A look at my calendar tells me that I've scheduled a revised edition of my book, "Caring for A Distant Parent", to be published in October 2009. So I'm taking some time off from this Blog to work on that revision.
I'll be back with you later this year. Please continue to direct questions that you have to me and visit the Parentcare 101 website often for resources, organizational contacts, and Healthy Chocolate.
Until then, Blessings on your caregiving!
Sunday, August 23, 2009
Monday, August 17, 2009
Advance Medical Directives--Resources
When I decided to write about Advance Medical Directives (AMD), I had not foreseen that this topic would be a centerpiece of the current public debate about health care reform. All the talk in the news, on blogs, and in town-hall meetings whether invoking the myth (not reality) of government "death panels" or debating the merits of insurer-paid consulting for end-of-life decisions--all this talk is about what we have been discussing over the last few posts.
Advance Medical Directives. A statement of what procedures and health care you would like if you are unable to physically express your preferences. As I've said before, these decisions are numerous and can be complicated. I've recommended that you consult all the resources available, such as a doctor, social worker or an eldercare attorney to help you decide what will be best. If your insurance coverage will pay for such consultation, all the better.
Let's look at some final subjects concerning the AMD.
Special Issues
• Both Your Parents Are Alive
If both your parents are still alive, it is possible that each of them, independently, may have written a Will and Advance Directives, but have never discussed these documents with each other, let alone with you. You may have to speak with each parent separately to discover where the documents are and their content.
• Second Marriages; Blended Families
The same communication caution applies if one or both of your parents have entered into second marriages.
• The Directives and Other Documents
Suggestions
Talking about the end of life is a difficult subject. In our society, we have been taught to fear death. However, death is a natural and inevitable part of life. In fact, it is the last rite of passage.
Keep the Advance Medical Directives in mind as your parent ages. Express your wishes. This may encourage him to express his own choices.
• If your parent is reluctant to be specific about his wishes, prepare your own statement and share it with him.
• If your parent is making out a will or trust, ask if Advance Directives will be part of it. Ask to see the final document.
• Remind your parent that Advance Directives are for her benefit, as well as yours. Whom would she choose to make such decisions if she can’t--a stranger? Or will she retain some control over the process by expressing her choices now?
Finally, if your parent refuses to discuss this and has not written any statement of Advance Directives, continue to seek out information. Conversations with your parent’s contacts, though difficult, may give you a hint of how your parent feels. Realize that your parent’s reluctance may come from deep sources of fear or discomfort of which you are unaware. Be firm, but not stubborn; be gentle and loving, but persistent in the face of her humanity.
To Read More
Laurence, Michael J. A Matter of Life and Death: Informed Advance Health Care Directives. Booklocker.com, Inc. 2007.
Schneiderman, Lawrence J. Embracing Our Mortality: Hard Choices in an Age of Medical Miracles. Oxford University Press, 2008.
“Advance Directives for Health Care Decision Making”. Tennessee.gov, Department of Health, Advance Directives. Accessed 8/17/2009.
Compares Advance Directives with Living Wills and Power of Attorney.
Aetna/InteliHealth Web Site. Under “Your Health” click on “More” > “Caregiving” > “Caring for Seniors” > See articles on End-of-Life Decision-Making and Living Wills. Accessed 8/17/2009.
Advance Medical Directives. A statement of what procedures and health care you would like if you are unable to physically express your preferences. As I've said before, these decisions are numerous and can be complicated. I've recommended that you consult all the resources available, such as a doctor, social worker or an eldercare attorney to help you decide what will be best. If your insurance coverage will pay for such consultation, all the better.
Let's look at some final subjects concerning the AMD.
Special Issues
• Both Your Parents Are Alive
If both your parents are still alive, it is possible that each of them, independently, may have written a Will and Advance Directives, but have never discussed these documents with each other, let alone with you. You may have to speak with each parent separately to discover where the documents are and their content.
• Second Marriages; Blended Families
The same communication caution applies if one or both of your parents have entered into second marriages.
- There may be communication barriers because you are related to only one of the couple. Your stepbrothers and stepsisters may face the same barriers with your parent.
- If there is some evidence that your parent and her spouse have prepared separate documents, it may be best to talk with each parent away from the other so that you can learn the truth about the documentation, not what your parent told his or her spouse.
• The Directives and Other Documents
- The Advance Medical Directives are always written in a document separate from a Will or a Durable Power of Attorney. The Directives may be attached to these other documents or the other documents may refer to them. The Advance Medical Directives may stand alone.
- A Will may be drawn up for a couple or for an individual. Advance Medical Directives, however, are always written for the individual. A Will for a married couple would then refer to two Directives.
- A Durable Power of Attorney is drawn up only for an individual, so it will refer to only one Advance Medical Directives statement.
Suggestions
Talking about the end of life is a difficult subject. In our society, we have been taught to fear death. However, death is a natural and inevitable part of life. In fact, it is the last rite of passage.
Keep the Advance Medical Directives in mind as your parent ages. Express your wishes. This may encourage him to express his own choices.
• If your parent is reluctant to be specific about his wishes, prepare your own statement and share it with him.
• If your parent is making out a will or trust, ask if Advance Directives will be part of it. Ask to see the final document.
• Remind your parent that Advance Directives are for her benefit, as well as yours. Whom would she choose to make such decisions if she can’t--a stranger? Or will she retain some control over the process by expressing her choices now?
Finally, if your parent refuses to discuss this and has not written any statement of Advance Directives, continue to seek out information. Conversations with your parent’s contacts, though difficult, may give you a hint of how your parent feels. Realize that your parent’s reluctance may come from deep sources of fear or discomfort of which you are unaware. Be firm, but not stubborn; be gentle and loving, but persistent in the face of her humanity.
To Read More
Laurence, Michael J. A Matter of Life and Death: Informed Advance Health Care Directives. Booklocker.com, Inc. 2007.
Schneiderman, Lawrence J. Embracing Our Mortality: Hard Choices in an Age of Medical Miracles. Oxford University Press, 2008.
“Advance Directives for Health Care Decision Making”. Tennessee.gov, Department of Health, Advance Directives. Accessed 8/17/2009.
Compares Advance Directives with Living Wills and Power of Attorney.
Aetna/InteliHealth Web Site. Under “Your Health” click on “More” > “Caregiving” > “Caring for Seniors” > See articles on End-of-Life Decision-Making and Living Wills. Accessed 8/17/2009.
Wednesday, August 12, 2009
Advance Medical Directives - 2
Hello, Readers!
I'm back from a short break. I spent some time at the North Carolina Outer Banks, a great place to watch the ocean and regain perspective on what's important in life. Hope you all had a good week.
In my last regular post, we began to discuss the Advance Medical Directives document. We talked about the types of decisions that you might be called upon to make, and the importance of knowing what each procedure stated in the Directives involves. Let's look at some other things to keep in mind for the Directives.
Forms for an Advance Directives Statement
The following sources will have forms available. Contact any one of these:
• A lawyer; particularly one specializing in elder law (see July's post on Eldercare Attorneys)
• The social worker at a hospital, hospice, home health agency, nursing home, or long-term care facility;
• The Attorney General’s Office in the state where your parent lives; or
• Caring Connections, a website created by the National Hospice and Palliative Care Organization (NHPCO), a national consumer and community engagement initiative to improve care at the end of life.
The Spiritual Side
In caregiving, especially in long-distance caring, there is a possibility that you, or your family, may not be with your parent at the end. Although not part of the standard wording, you may want to add a statement in the Advance Directives about honoring a person’s religious practices—calling a minister, rabbi, imam or priest, arranging for rituals that might bring comfort to your parent. The Directives are reviewed by health care staff regularly, and the staff will try to follow any reasonable request.
The Directives In Use
You must be an advocate for your parent’s wishes, whether you live close or far away.
• If your parent is admitted to a health care facility, request that the Advance Directives be filed on the top of your parent’s medical records chart. This will mean that every time a nurse or doctor looks at the chart, he will see your parent’s wishes first. When you visit the facility, check that your request has been fulfilled to your satisfaction.
• Make sure that the facility personnel understand your parent’s wishes. Speak personally with every member of your parent’s health care team.
• Every time a new doctor (usually a specialist) enters the treatment process for your parent, reiterate your parent’s wishes verbally and note that the Advance Directives are with the medical chart.
• Check your state's regulations or ask your parent's doctor. Some states require that the physician call the caregiver regularly to ask about Directives. In some states, this call must be made even at the time of intervention, such as before administering CPR.
In a crisis situation, the doctors and nurses may NOT refer to your parent’s chart for Advance Directives information. You might have heard of people being resuscitated even though they had written orders to the contrary. This is why it is important to mention those decisions regularly and keep those Directives at the front of the minds of the health care staff caring for your parent.
In my next post, I'll finish up with some special issues about the Directives and resources for further reading.
Blessings on your caregiving day!
I'm back from a short break. I spent some time at the North Carolina Outer Banks, a great place to watch the ocean and regain perspective on what's important in life. Hope you all had a good week.
In my last regular post, we began to discuss the Advance Medical Directives document. We talked about the types of decisions that you might be called upon to make, and the importance of knowing what each procedure stated in the Directives involves. Let's look at some other things to keep in mind for the Directives.
Forms for an Advance Directives Statement
The following sources will have forms available. Contact any one of these:
• A lawyer; particularly one specializing in elder law (see July's post on Eldercare Attorneys)
• The social worker at a hospital, hospice, home health agency, nursing home, or long-term care facility;
• The Attorney General’s Office in the state where your parent lives; or
• Caring Connections, a website created by the National Hospice and Palliative Care Organization (NHPCO), a national consumer and community engagement initiative to improve care at the end of life.
The Spiritual Side
In caregiving, especially in long-distance caring, there is a possibility that you, or your family, may not be with your parent at the end. Although not part of the standard wording, you may want to add a statement in the Advance Directives about honoring a person’s religious practices—calling a minister, rabbi, imam or priest, arranging for rituals that might bring comfort to your parent. The Directives are reviewed by health care staff regularly, and the staff will try to follow any reasonable request.
The Directives In Use
You must be an advocate for your parent’s wishes, whether you live close or far away.
• If your parent is admitted to a health care facility, request that the Advance Directives be filed on the top of your parent’s medical records chart. This will mean that every time a nurse or doctor looks at the chart, he will see your parent’s wishes first. When you visit the facility, check that your request has been fulfilled to your satisfaction.
• Make sure that the facility personnel understand your parent’s wishes. Speak personally with every member of your parent’s health care team.
• Every time a new doctor (usually a specialist) enters the treatment process for your parent, reiterate your parent’s wishes verbally and note that the Advance Directives are with the medical chart.
• Check your state's regulations or ask your parent's doctor. Some states require that the physician call the caregiver regularly to ask about Directives. In some states, this call must be made even at the time of intervention, such as before administering CPR.
In a crisis situation, the doctors and nurses may NOT refer to your parent’s chart for Advance Directives information. You might have heard of people being resuscitated even though they had written orders to the contrary. This is why it is important to mention those decisions regularly and keep those Directives at the front of the minds of the health care staff caring for your parent.
In my next post, I'll finish up with some special issues about the Directives and resources for further reading.
Blessings on your caregiving day!
Monday, August 3, 2009
Vacation
If you are enjoying this blog, you might enjoy seeing all of my Care Tips in one place. My latest book, Caring for a Distant Parent, includes advice from professionals, stories from caregivers, and tips from my experience to support you on your entire caregiving journey. You can order it directly from the Parentcare 101 website or send me an e-mail.
I'll be on vacation this week. Please check back on Tuesday, August 11, 2009 for the next installment on Parentcare 101. Have a good week!
I'll be on vacation this week. Please check back on Tuesday, August 11, 2009 for the next installment on Parentcare 101. Have a good week!
Thursday, July 30, 2009
Advance Medical Directives
“It’s a good thing your dad died quickly,” Alice told her son. “He wasn’t stuck on those machines like a vegetable. I don’t want that either. Pull the plug, you hear?”This is not a sweet "Hallmark" moment, but it does let you know this woman's basic wish concerning life-sustaining measures. More effective--and carrying legal force--is a document called Advance Medical Directives (AMD). Along with the Durable Power of Attorney, the AMD is an important tool in information gathering and in caregiving.
What Are Advance Medical Directives?
Each person has the right to accept or refuse medical treatment. Advance Medical Directives, or simply Advance Directives, protect that right if a person ever becomes mentally or physically unable to communicate his wishes due to serious illness or injury.
The Advance Directives state clearly what life-sustaining measures a person wishes the doctors and nurses to take on his behalf. The Directives:
• Protect a person in extreme conditions such as brain damage, permanent coma or terminal illness when he is unable to communicate; and
• Limit life-prolonging measures when there is little or no chance of recovery.
In most states, law now requires that a statement of Advance Directives be on file for each resident or patient in a hospital or nursing home. Also, each state may use a different document, such as a living will, a medical/durable power of attorney or a general statement. Consult legal counsel in the state in which the Advance Directives will be used.
What Types of Decisions Might You, As Caregiver, Need To Make?
The woman’s off-handed comment above to “pull the plug” actually may mean making a number of decisions concerning:
- The use of Cardiopulmonary Resuscitation (CPR) to revive her;
- The use of a respirator (a machine to mechanically work her lungs) to keep her breathing;
- When and if to treat infections that, if untreated, would shorten her life;
- The use of feeding tubes to provide nutrition if she could not eat normally;
- Providing appropriate pain relief;
- When and if to use dialysis to clean her blood by machine if her kidneys no longer functioned; and
- Organ donation (specific organs or entire body).
For each of these situations, the health professionals will look to you, as caregiver and decision maker, as well as the AMD for guidance if your parent is unable to express her own wishes.
Perhaps, due to current circumstances, you feel that you won’t have to make these decisions for your parent, but life happens, circumstances change, and you may find yourself responsible for important emergency or end-of-life decisions. Prepare now.
Know What Each Procedure Involves
Each of the life-sustaining measures noted above has many variations and intensities of treatment. While making decisions and preparing the Advance Directives, if you are unfamiliar with a procedure or don't understand the language describing the procedure, consult a physician before completing the Directives.
Implications
According to a recent study, only 27 percent of adults have Advance Directives in place. This means that most people, when faced with end-of-life decisions, have no guidance, may be guessing about the patient's wishes and may decide based on their own preferences, not those of the patient. Take the guesswork out--for you and your parent--by having Advance Medical Directives in place. In other studies, stress levels for the family making end-of-life decisions were significantly reduced when Advance Directives were in place. The family could concentrate on the person's quality of life and be guided by her own wishes in the decision to stop life-sustaining treatments. Suffering is not needlessly prolonged. There is less agonizing over a decision; your parent has already told you, in writing, what to do.
This is one of the most powerful ways you can honor your parent. Honor her wishes on the manner in which she wants to live and die.
Do Not Hurry
Because numerous procedures and treatments are discussed in the AMD, be prepared to spend some time compiling this document. You or your parent may not be writing the document yourself (although you can), but deciding what options would be best under what circumstances may take some time. If you are helping your parent with decisions and information, the discussions may carry over several sessions. Do not hurry the process; these are some of the most important decisions your parent--and you--will ever make.
In my next regular post, I'll provide more tips and suggestions for the Advance Medical Directives. Until then, Blessings on your caregiving day!
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