Photo taken in Tel Aviv, Israel
Planning ahead... |
Understanding Advance Care Planning |
I came across this quote in a hospice in the UK: "We spend 9 months, at least, preparing for a birth, why do we spend such little time preparing for death?" Now, to be fair, death is not on the same 9 month timeline, but the idea remains: we spend a very short amount of time preparing for death. This is for many reasons, often personal. Sometimes we don't want to admit that we or our loved one is dying, sometimes it is unexpected, sometimes we argue that what is really important right now is to be able to focus on the life of the person. All valid explanations, this is indeed a difficult reality. However, the problems occur when, in a person's illness, the hospital must make real time decisions which could affect the quality of life of that person and really are life or death situations. By preparing ahead of time, you assist your family and the health care system to best carry out your wishes. By preparing ahead of time, you are able to assess your wishes and desires while you are healthy, not in a distressing, life or death situation. Also note, that just because you have made decisions ahead of time does not mean you cannot adjust and change them. You are a dynamic human being and things change, but being able to have some planning completed ahead of time can only benefit you and your loved ones.
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Not every country has the same types of advanced care planning. Some countries require much more documentation than others. Some legal documents are highly detailed, others much more vague and open-ended. In the United States, these documents vary state by state. Some cultures have used this type of documentation for a long time and it is an integral piece of their health care system. Others are only just beginning to implement these documents and they are not yet completely integrated. Provided below is just a short summary to give you an idea of the types of documents you might come across. I would suggest speaking specifically with your own doctor or lawyer to discuss which ones might be best for you, where you live, at this point in your life. I would also suggest keeping a binder with copies of these documents once you have filled them out for easy reference for yourself and your family.
1. Power of Attorney (POW) for Health Care- legal document stating that a specific person will be your decision maker should you not be able to make your own decisions. 2. Living Will- this is more of a summary of a person's wishes, not guided necessarily by specific questions. This is very common though in many countries as it is very open-ended allowing for a person to give many personal and specific wishes. 3. Combined Directives- sometimes referred to as Advanced Directives, also vary by location, these are more extensive than POLST forms and are usually more structured in their questions for making decisions. They, however, are not always legally binding. 4. Physicians Orders for Life Sustaining Treatment (POLST in the US; POST in Canada)- these forms can vary by location but basically assess if you would like to receive certain specific treatments such as CPR, intubation, antibiotics etc. if you went to the hospital in an emergency, this form can be particularly helpful to your health care givers. Other countries have various forms of this as well, sometimes referred to as the DNR order or are part of a living will, but it varies greatly depending on the health care system and how involved the legal system is. For more detailed information: http://www.uptodate.com/contents/advance-care-planning-and-advance-directives |
Choosing a Health Care Agent |
Questions for Discussion and Contemplation |
It is important to have at least one trusted person that you have had some discussion on the care you would have and the decisions to be made around End of Life Care, choosing a personal decision-maker essentially often referred to as your Health Care Agent. It is important then to have a legal document stating that this is the person to make decisions for you, should you not be able to make them for yourself, particularly in Western countries where documentation is everything. Though this documentation can vary country by country, in the USA it is the Advanced Directive, which also varies state by state. See the link below to check out your state's particular Advanced Directive.
It is also important to know and have written down or documented the following:
1. Your physician ***It would be wise to ask yourself when choosing a primary physician, if you have multiple: Do you feel this doctor is listening to you, understands your end of life wishes and is willing to honor them? Is this physician open to discussing fears or concerns you have about death and the dying experience? 2. Religious or spiritual affiliation 3. Your hospital *from the Heartland Manor Care Guide "Making Choices" (USA) |
Personal
-what are my feeling about death and the dying experience? -have I experienced the death of a close family member or friend? How did that experience shape your feelings and beliefs? -Where do you want to be where you die? (Home? Hospital? In patient hospice unit?) -Do you have any special requests? (Music, candles, food, animals?) -If you are experiencing pain and nausea, would you want help controlling these symptoms? -If your doctor told you that you only had a short time to live, would you want all medical treatments possible? (I.e. Feeding tube, IVs, antibiotics)? -What is your idea of being treated with compassion? With your family and selected Health Care Agent Are you comfortable with... -Stopping treatment that may be life -sustaining but is not helping the quality of my life? -Consenting to admission to a nursing facility if I need that level of care? -Applying for Medicare, Medicaid or other insurance programs that would provide financial assistance if I needed it? -Allowing health care professionals to determine how much pain medication to give me if I have pain? -Getting legal counsel to assist in ensuring my wishes are fulfilled? -Acting as a decision-maker when I am unable? -Describe in your own words, what health care options are most important to you as you continue in your journey? -How would you want to be cared for during your final days? *from the Heartland Manor Care Guide "Making Choices" (USA) |
Useful Advice from Japan
During my time in Japan, I came across a woman who had taken care of 5 family members in their last years of life. With the knowledge and wisdom gained from these experiences, she put together a large binder as well as put all the information onto flash drives for each of her children with the following information to have prepared for when she passes away. She intentionally put this together now, while she is still very healthy, and had the energy to organize and communicate her wishes with her family. Though every aspect on this list may not apply absolutely to your situation, it is a great guide and a very practical way to not just prepare things logistically for one's family, but also to systematically reflect upon one's life.
Please note: this is very thorough and extensive and some aspects may be unnecessary for you, but the thorough nature of this list can also be very helpful in assessing what is and is not important for you and can be extremely helpful for your family down the line. |
1. Family Generations or Family Tree
2. List of books where the family might be mentioned 3. The News- list of 2-3 big events which occurred a. Locally b. Nationally c. Globally for each year of life 4. Selected pictures (often scanned onto the computer) 5. List of Activities, Writings and/or Lectures 6. Expenditure for each child (to assist in making a fair will) 7. Health Information 8. Advanced Directive information in writing 9. Will and message for the family 10. Address list (could incorporate e-mails too) of family members to contact when person has died 11. List of electric appliances and warranties 12. List of where certain precious items are throughout the house so the children can find them 13. Information on license, insurance, cell phone, memberships (who to contact to put an end to these) 14. Credit Card Information 15. Bank information and how each particular bank was utilized 16. Family Recipes 17. Family list for emergencies |