Wednesday, January 30, 2008

Uncertainty

Who will I support for President? I had been leaning toward John Edwards, but he dropped out. I cannot support any Republican because I fear who any of the Republican candidates would appoint to the Supreme Court. Realistically, I am left with Hillary or Barack. Because I live in Texas ( a Republican state), my vote will not count, so maybe I should forget about the Presidential race.

Still, there is a small chance that my vote might count in the Democratic primary, if Super Tuesday does not determine the Democratic nominee. I will have to study both candidates positions. My focus will be health care and stem cell research, but I also need a better feel for both candidates character.

I read the story of Deborah and Barak in Judges. Are we looking at a modern day parallel? My intellect says that is ridiculous; my heart says God speaks to us in mysterious ways. I will have to think and pray on this.
Choice can be so difficult.

Monday, January 28, 2008

A Cynical View

I have already grown weary of the political races. There is something wrong with a system that disenfranchises those of us who live in states that do not have early primaries. If you live in a state that is primarily Democratic or Republican, then even in the Presidential contest your vote does not count if you are in the minority party.

I live in Texas. If I vote for the Democratic candidate in the national election, my vote means nothing. If I vote for the Republican, my vote doesn't mean much more, only adding to a clear majority. Politicians wring their hands over lack of participation, but do nothing to make popular votes count in the main election. Neither party wants to upset the status quo, both are more beholden to big money than to the populace.

I don't see any changes coming soon. There is a lot of talk about change, but no action, no concrete plans. Obama talks change, but would not change the way health insurance is handled. He is satisfied to let insurance companies make life and death decisions. No change there. Hilary Clinton blew health care once, she won't buck the insurance companies. The Republicans don't even care. The more people die because of poor health care, the fewer there are to vote against Republican candidates.

I see no hope in the near future. Only when conditions are so bad that even the poor vote (or the poor are the majority of Americans) will there be a change. We need a strong third party, but that can only come from the grassroots. Americans need to wake up and realize that what's good for business is not good for them. We need to remember that Christ said to care for the least of those among us. Why doesn't this nation care? Where are the Christians?

Friday, January 25, 2008

God of Love

In the last few weeks, I have lost a cousin and a dear friend. My cousin was a committed Christian, my friend a Jew. Some of my Christian friends would tell me only my cousin is with God because only he had accepted Christ as his Savior. I do not believe that. My friend was a sweet, intelligent man that fought a gallant battle with Parkinson's disease. If he is not with God, then surely God is a vindictive being that does not care for his creation. I do not believe that. The God that I know is a God of love, a God that commands us to love him and love our neighbor. The God that I love wants to hold us close and weeps when we stray, just as Jesus wept when he beheld Jerusalem, knowing what was to come for those within that city.

Monday, January 21, 2008

Parkinson's Disease:Failure to Initiate

I attended the monthly Parkinson's support group last Saturday (January 19, 2008). A neurologist spoke, so there was very good attendance. There were several new faces. I met with the caregiver's while the Parkinsonians exercised.

Parkinsonians tend to turn into the world's most accomplished couch potatoes. This fact was worried about by several different caregivers. Some said "I can't get my PDer to exercise." Others said, "He doesn't want to do anything, go anywhere." There was general consternation at this phenomenon.

What the caregivers did not realize was that lack of initiative is very much part of Parkinson's Disease. One of the symptoms of the disease is a failure to initiate. Parkinsonians have a difficulty beginning any task. The result is too often they just sit. Caregivers must help them get started, encourage them to move, and insist they engage in social activities. That is not easy.

I found that having a routine that included activities every day was very important during the sixteen years that I was my mother's caregiver. I was the first up every morning. I woke her at the same time each morning and dispensed her first medicine of the day: her levodopa/carbidopa and other Parkinson's meds. I made sure she was up and on her way to the bathroom before I went to prepare breakfast.

Midmorning, I checked my e-mail while she exercised in the same room. I could prompt her if she needed encouragement. Sometimes, I had to insist she leave the television and join me, so that she could exercise. She always came when I insisted. Early in her battle with Parkinson's she had become a conscientious exerciser with no prompting needed. She changed as the disease progressed.

Every Sunday we went to Sunday School and ate out. This was an important time for her. In a safe setting, she could socialize with people she had known for years. Eating out changed the monotony of my cooking. I purchased an adult bib at a local medical supply house which made eating out much more enjoyable because she did not have to worry about dropping food on her good clothes.

Everyone is different, but I encourage you to have a schedule, both daily and weekly. Stick to it as much as possible. Always remember to help your Parkinsonian begin any activity. Above all, join a support group.

Friday, January 18, 2008

Christian blogs

I have been reading so-called Christian blogs this week. I find too many of them terribly depressing as they try to prove their view of Christianity correct. Many are all too eager to prove that another's beliefs are false. Very few would reach out to those that are not Christian. Many I believe would turn-off a non-believer.

Christ told us to love our neighbor as ourself, then gave the parable of the Good Samaritan. Do we forget that Jews of Christ's day did not believe that Samaritans were true believers? I believe that Christ was telling us that the fine points of theology are less important than how we treat others.

Jesus' command was simple: love God and love our neighbor as yourself. In the parable of the Good Samaritan(Luke 10:30-37), he told us who our neighbor is. Why don't we understand? Piety does our neighbor no good unless we turn it into action.

For me, the saddest blogs are by women who apologize to any man who might read their blogs and think that these women presume to teach men. Christ treated women as equals. The first to see the risen Christ was a woman. Only as the church hierarchy formed were women excluded from leadership roles. I believe God speaks to the hearts of men and women equally. Our duty is to heed that call.

Now, I am putting down the real beliefs of others. I am just as wrong. All I need say is that I believe in Jesus Christ, the Word made flesh. I will try to follow his command.

Wednesday, January 16, 2008

Ethics of Dying:Durable Power of Attorney

Most people, no matter their age, should have a Durable Power of Attorney. This power of attorney lets someone (your agent) manage your financial affairs simultaneously with you. Depending on where you live (I'm only familar with Texas), this power of attorney may be designed to go into effect immediately or not until you are unable to make decisions (a springing power of attorney). In Texas, you may make the decision as to when your power of attorney goes into effect. However, if you do not trust the person you designate to have this power while you are able to manage your affairs, why would you let them do so if you are unable to manage your financial affairs? Also, with a springing power of attorney, there must be additional paperwork to accompany it to show that you are incapacitated (a doctor's statement, etc.). This makes it less likely that the power of attorney will be honored. In Texas, financial institutions sometimes refuse to honor such documents. My preference is a power of attorney that goes into effect immediately.

If it is likely that someone will have to manage your affairs, then it may be better to give your agent signature rights on your financial accounts. This is especially true if the agent is a close relative. Even if you do this, you still need the durable power of attorney. The term durable is used to indicate that within this document there is a statement that says that the power of attorney remains in effect even if you are incapacitated.

A copy of this document should be kept with a copy of your medical power of attorney to take with you if you are hospitalized. In some states, these two documents may be combined into one. The durable power of attorney may be needed so your agent can sign admitting documents, etc. Remember the durable power of attorney is only effective when you are alive.

Because a durable power of attorney is so powerful, I recommend that you discuss its implications with an attorney before executing one. If you choose to do one without an attorney, then just remember that anything you can do with your financial resources, your agent can do, too.

Monday, January 14, 2008

Ethics of Dying: HIPAA Release

One document that I now recommend everyone have is a HIPAA release. HIPAA is the Health Insurance Portability and Accountability Act. More information on the privacy aspects of HIPAA is available at privacy rights.org. The HIPAA release allows the person designated by the release access to your medical records. Usually, this is the same person that is designated as your agent in your medical power of attorney. The form I have seen also gives access to your medical records to other people designated in powers of attorney for financial affairs, trustees, etc.

Because HIPAA regulates the release of medical information, there is concern that unless specifically mentioned, medical records might not be open to your agent. A medical power of attorney should allow your appointee access, but there are always concerns about an overzealous privacy officer withholding access. So to be safe, if you are having end-of-life documents prepared by an attorney, ask that a HIPAA release be included.

Saturday, January 12, 2008

Ethics of Dying: Do Not Resuscitate

I do not recommend that "Do Not Resuscitate" orders be made routinely outside a hospital setting. If someone is in hospice care then DNRs are appropriate at home. In a hospital setting, DNRs are very useful.

Having a DNR will keep extraordinary means from being used. One thing to remember, especially in the elderlty, is that CPR may well break bones which in turn can cause other complications. Most hospitals will allow some mild efforts to be made to keep you alive, such as administration of drugs that stimulate the heart even with a DNR in place, but that must be specified in the order. These are issues to be discussed with your physician, the earlier the better.

I do not recommend DNRs at home because if you are able to live at home and do not have hospice care, then I believe that there are too many variables to decide that no matter what you will not be resuscitated. It is far better to have the person that holds your medical power of attorney make that decision based on the circumstances at the time. Again, this is a personal decision and there is no correct answer, only what you want.

DNRs are only useful if those taking care of you know that you have one. In the hospital, this is not a problem usually. You must have the DNR at hand, if it is to be used at home. If emergency services are summoned to your home, their job is to keep you alive. Whether or not they will honor a DNR will depend on the law of your state. Many in hospice are told not to call emergency services in a crisis, but instead call hospice. This avoids the issue entirely.

Finally, life support can be removed. Even if you do not have a DNR or it has not been used or it has been ignored, you can make the decision to withdraw life support, or if you are not capable of making decisions, the person that holds your medical power of attorney can make that decision.

Thursday, January 10, 2008

Ethics of Dying: Advance Directives

Advance directives, living wills, medical powers of attorney, HIPAA releases, Do-Not-Resuscitate orders, etc. have limits. These are written documents that cannot express all your wishes. The best of them, the medical power of attorney, appoints someone to make your decisions if you are not able to make them. All of them can be fought in court. However, if you have chosen the proper person for you medical power of attorney, that person will stand up for you and make sure your wishes are followed.

If there is disagreement within your family about end-of-life decisions, then frank discussions of your wishes are imperative. You do not seek to change the mind of those opposed to your decisions, only that they will honor them. If, in the worst case, it is clear that your wishes will not be followed, then I would put something in writing to the effect that this person is to be excluded from any health care decision pertaining to me. Be sure to sign, have it witnessed and better yet, notarized. Depending on how serious the conflict, this might be an issue to discuss with an attorney.

Advance directives only work if the hospital and the doctors have them. I recommend that a copy be made of each document and kept in a plastic bag in a readily accessible spot, e.g. taped to the door of the refrigerator, in the refrigerator freezer, in the top drawer of your desk, etc. The person with your medical power of attorney should have a copy of all documents and know where the originals are kept. Don't keep originals in a safety deposit box unless the person who holds your medical power of attorney has access to that box. Even then, I think is is better to keep these documents in a safe place in your residence.

Each time you go to the hospital, even if you were recently hospitalized in the same one, have copies of your documents to be put in your chart or records. Make sure that all your doctors are aware you have executed these documents, and most importantly, communicate your wishes directly to the doctor. Doctors will honor your oral directives if at all possible.

Advance directives work if they have not been done in a vacuum, that is, done on paper but never discussed. I have used directives to make decisions about the end of life successfully. The lack of advance directives can make a difficult time even more horrendous. Ease your loved ones burden and have these documents done.

Tuesday, January 8, 2008

Ethics of Dying: Living Will

In Texas, a living will is a "Directive to Physicians and Family or Surrogates" and allows you to put in legal form your end of life decisions. The Directive divides end of life decisions into two categories, one if you are facing eminent death and the other if you are in a persistent vegetative state. No matter where you live, you need to consider these two categories.

What kind of medical treatment do you want if you have a very limited time to live? Do you opt for comfort? Do you choose a last ditch effort at treatment to prolong your life? There is no correct answer. While I would choose comfort and not a life prolonging treatment because I am a Christian and convinced that death is a door to better existence, I do not believe that should be everyone's choice. I fear that too often societal pressures make it seem that we are misusing resources and somehow wrong to fight for every minute of life. I believe this becomes more prevalent as we age, but quality of life, not age, should be the deciding factor. For this reason, I think you have to consider this choice long before you are enmeshed in medicine's clutches.

I know people who have advanced directives that make it clear that they wish to stay alive at all costs. Others I know do not want hospice. However, I believe the vast majority of people who bother to execute a living will do so because they do not want their life prolonged by artificial means including artificial nutrition and artificial hydration. I find that in the absence of a living will or other clear direction, most families opt for all life prolonging measures.

More difficult for me is to decide what you want done if you are in a persistent vegetative state. As I understand this state, you are never expected to regain consciousness, but you will not die if you are given artificial nutrition and artificial hydration and personal care. This is difficult because here we confront the imperfections of science. In extreme cases, there is no doubt that the person will never recover, but we all know cases where there has been a seemingly miraculous recovery. My choice would be no artificial nutrition and no artificial hydration: let me die. I do not think that is the correct choice for everyone. Only an individual can make that choice for themselves. In the absence of a directive or other clear directions, every effort should be made to keep someone in a vegetative state alive. Again, make your wishes known in a living will.

Wednesday, January 2, 2008

Ethics of Dying: Medical Power of Attorney

I made end of life decisions for both my grandmothers and my mother. My paternal grandmother died from stomach cancer back in the seventies. She did not have any of the legal documents available today. Everything was done on the basis of her wishes in a tacit agreement with her doctor and the hospital. There were no extraordinary measures taken, but everything was done to keep her comfortable. My mother and I were able to keep her at home until the last few weeks. My mother changed to a night shift (I worked days), so my grandmother was alone each day for only a couple of hours. While my grandmother was weak, her mind was clear until the end. The last days were difficult as she needed more and more pain medication. She turned the decision-making over to me, so I opted for her comfort even if it shortened her life by a few days. My mother and I were both with her when she died.

When my maternal grandmother came to live with us many years later, I knew she needed legal documents if I was to make decisions for her. She met with an attorney and had the necessary documents executed. I was designated as her agent in her medical power of attorney. Over the next seven years she lived with us, I would use that medical power of attorney several times including her final illness. In Texas, a medical power of attorney is only effective if the person who executed it is unable to make their own decisions. My grandmother ws competent, if stubborn, most of the time. However, she had several procedures that involved sedation or mild anesthesia. At those times, I took over the decision-making.

At age 96, she had major surgery from which she never recovered. After the surgery, she never really regained consciousness, so I made her choices as to treatment. I acted under the medical power of attorney. All seven of her children were able to visit her before she died. One aunt strongly objected to some of my decisions, but all she did was tell me of her disagreement. She could have done much more. Any legal document can be challenged including living wills and medical powers of attorney. While the courts usually follow the wishes of the person who executed the documents, court disputes can delay end of life decisions. The best way to avoid courtroom showdowns is to make sure your end of life decisions are known to all your immediate family and that these choices are clearly spelled out in the proper documents.

My mother had Parkinson's disease (PD), and after sixteen years PD killed her. I made the decision to keep her comfortable, but nothing more. I am an only child, so there was no one to object. Nevertheless, it was easier to act because I had her medical power of attorney. Friends and family stayed with her in the morning; I stayed every night. I held her while died early one morning. Even as my brain knew I had made the correct decision, my heart told me I had let her go too soon. Only knowing that she did not want machines provided solace.

I believe everyone should execute a medical power of attorney if there is someone that you would trust with your life. I think it is wrong to execute a medical power of attorney unless thought has been given to who will make decisions. Do not wait until you are in the hospital facing life and death decisions. You also need to consider what actions you want your agent to take in different situations and tell whoever holds the medical power of attorney your exact wishes. Do you want artifical nutrition, artificial hydration, a respirator, heroic mesasures to keep your hear going even though some procedures might break ribs? Talk to someone who has used a medical power of attorney. Find out what they faced. Above all, discuss these issues with those around you.

Tuesday, January 1, 2008

Ethics of Dying: Why me?

I give talks on various topics. One is the Ethics of Dying. One reason I was originally asked to speak on this topic is that I have made end of life decisions for both my grandmothers and my mother. I was with each of them when they died. Intellectually, I can tell you that I have absolutely no problems with the decisions I made in each case. Emotionally, these decisions still have the power to make me second-guess what I did. This is true, even though, I knew the wishes of each of my loved ones.

My maternal grandmother had seven children, but she chose me to make her end of life decisions. I think she understood that her children would never agree and that would create ill feelings. As the oldest grandchild, I knew the dynamics of the family and believe she made the correct choice. One of my aunts did not agree with my choices, but she knew I followed her mother's wishes and did not object. She would have opted for keeping her mother alive by any means as long as possible.

That is my message today. You must communicate with your loved ones. If someone is legally empowered to make these decisions for you, they must know your wishes. If you are to make these decisions for someone else, ask them what they want. This does not mean a simple: "let me die." Modern science can provide a host of options as death nears. Some involve the use of machinery to keep you alive. Do you want to be on a respirator? Think about that now while you are healthy and tell your loved ones. Better yet, put it in writing. A living will is one way to communicate your wishes.

The biggest decisions involve food and water or as I prefer to say: artificial nutrition and artificial hydration. This is a highly personal decision that I believe only the individual can make. I do know that deprived of artificial nutrition and artificial hydration, the body stops fighting and chemicals are released that ease the end. So if I am dying, I do not want artificial hydration or artifical nutrition. How can you expect someone to make these decisions if they have not discussed it with you?

Do you want hospice care? Deciding to use hospice, usually means ending the fight to stay alive. Comfort is the primary goal. Again, something to think about and discuss.

I have seen the decision to administer artificial nutrition and artificial made both ways. I have made it both ways for my loved ones depending on their wishes and the circumstances. I have second guessed myself either way, even though I know I honored their wishes. For this reason. I urge everyone to communicate their end of life desires.

I believe the best way to communicate is by executing the proper legal documents as designated by your state. Most hospitals can supply forms for this and you can always seek an attorney's advice. Other organizations such memorial and burial societies ( http://www.funerals.org) can provide assistance. Just realize that some of these documents are specific to each state. Use those designed for where you live. If you later move, they will be honored, but it is always better to execute those specific to your home state. If nothing else, put your wishes in writing in your own words.