Quick Tip 1
Quick Tip 1
Make sure you understand the key questions toy want your Advance Directives to address. Otherwise, you may miss things that are important.
Quick Tip 2
Although it will look like there are many documents needed in managing your end of life care, a good Advanced Medical Directive can address the concerns that all the other documents can address. If stopping first responders from administering CPR is a concern, you’ll have to add a community DNR.
When Carmen and I first decided to investigate how seniors addressed aging, we purchased a legal text on Advance Medical Directives (AMD). Carmen had recently flown her mother’s sister out to convince Carmen’s mother that she should go to the hospital. It worked. While sitting in the hospital I asked the ladies, “What does Nola want if she’s very ill in terms of medical treatment? Is she OK with dialysis or feeding tubes? “I don’t know,” was the response of Nola’s daughter and sister. The AMD text was 4,000 pages.
You can pick the right document and cover all the things that are important to you. However, t does take a little background work. If you have no time and want to work the quick guide, click here.
Like so much of today’s modern world, there is no one single document people refer to when they discuss medical treatment at the end of your life. Before we explain what these documents are called and what they do, let’s discuss the range of what people are striving for in end of life medical treatment options. In other words, the documents address people’s concerns at the end of their life, or when they have life threatening or terminal illnesses. What are they?
Question 1 – Decision Making
Who do I want to make medical decisions on my behalf when I can’t?
If your end of life documents are clear enough, you can, by using those documents. If something makes your words unclear, you can have an agent make that decision. And sometimes, you can even have your doctor’s make the decision, relying on their expertise.
Decision making options:
Question 2 – Life-Sustaining & Prolonging Medical Treatments
What life-sustaining medical treatments do I want?
Life sustaining medical treatments can be initiated (started), refused or withdrawn. Often times these treatments are started and then stopped. For example, a ventilator to help you breathe is necessary during any surgery that requires general anesthesia. The ventilator may also be required after surgery to help the patient breathe until they get healthy enough to breathe on their own. The usage of antibiotics also involves starting and stopping.
Common life-sustaining treatments are:
Question 3 – End-of-Life Care Decisions – Non-Medical Treatment Issues
In addition to medical treatments, many people are concerned about end-of-life decisions involving where and how there last days will be spent; and body and body part donations. These include:
Place To Die
Most people die in hospitals or institutions. If you want to die somewhere else, like at home, you’ll need to make careful preparations. This wish should be emphasized in your advance directive documents. If its critical that you die at home, you may have to make clear decisions about not wanting medical interventions, even when those interventions could extend your life, and your existing quality of life
Care for people with serious illnesses. The medical care focusses on relief from the symptoms and stress of the illness. Treatments are not curtailed, but they focus on improving quality of life. Care is provided by a team of doctors, nurses and other specialists that work with the patient and the patient’s family. Other treatments from other doctors are not stopped.
Palliative care teams are exceptions in addressing congestive heart failure (CHF), kidney disease, cancer, chronic obstructive pulmonary disease (COPD), Amyotrophic Lateral Sclerosis (ALS), Alzheimer’s, and Parkinson’s.
Some studies indicate patients with serious illnesses who receive palliative care live longer than those who did not receive this care.
Hospice care is focused on comfort, not fighting the disease or illness. Hospice care focuses on the quality of life for people and their caregivers experiencing an advanced, life-limiting illness. It is for people in the last phases of incurable disease so they can live as fully and comfortably as possible. Hospice care does not involve fighting the illness. If you want to continue to fight against the illness, see palliative care.
Many people want to donate their body, organ and/or tissue. Your advance care directive documents should make these wishes clear.
Question 4 – How Comfortable Do I Want To Be (Pain Management)?
Do I want pain medications used to eliminate pain? If I require a level of alertness, what is that level?
Toward the end of our life and especially during the period when we are dying, we may be in extreme pain. Our bodies may be riddled with disease or be in disrepair. How aggressively do I want my pain managed? At some dosage pain medication puts us to sleep. Some pain medication can diminish our capacity to think.
About 12% of Americans use opioids to address pain and discomfort. Many illegally. Others are very opposed to all types of medications, including pain medication. Some religious people believe artificially reducing pain is inappropriate and a way of separating you from Christ.
Mother Teresa said the following: “Pain and suffering have come into your life, but remember pain, sorrow, suffering are but the kiss of Jesus – a sign that you have come so close to Him that He can kiss you…Suffering is nothing by itself. But suffering shared with the passion of Christ is a wonderful gift, the most beautiful gift, a token of love.”
The modern Catholic Church has said the following about pain management at the end of life: “Patients should be kept as free of pain as possible so that they may die comfortably and with dignity and in the place where they wish to die. Since a person has the right to prepare for his or her death while fully conscious, he or she should not be deprived of consciousness without a compelling reason. Medicines capable of alleviating or suppressing pain may be given to a dying person, even if this therapy may indirectly shorten the person’s life so long as the intent is not to hasten death. Patients experiencing suffering that cannot be alleviated should be helped to appreciate the Christian understanding of redemptive suffering.” Ethical and Religious Directives for Catholic Health Care Services, National Conference of Catholic Bishops, Washington, DC, 1995, n. 61.
The Catholic Church also approves of balancing the costs to the community. “The patient may also consider the expense that the treatment may impose on the family and the community at large.” (ERD, n. 57). Other religions share this balancing and would be concerned about the impact on the world (environment, resources, etc.) and whether such treatment is equitably distributed. These include Quakers, Unitarians, and Evangelical Lutherans.
Other religions have no problem with prolonging life. They believe God wants man to experience a rich and long life. To continue to learn in this world and study. More years equates with more wisdom and more time to share the glory of God.
Life sustaining medical treatments at the end of one’s life makes for a great sermon or Bible Study topic. Check with your Church, Temple or Mosque. They will usually have a pamphlet or resource for you to better understand your faith’s position.
Question 5: Quality of Life
If “quality of life” is important to me, how can I describe it so medical interventions to prolong my life are not used when I don’t.
Toward the end of our life we face increasing declinations in cognitive and physical capabilities. For some of us this will effect what we call “quality of life.” For others, it won’t matter much. Some of us will require mobility and cognitive capability to feel we have a quality of life. For others, life and a breath of fresh air is more than enough.
When our bodies are failing, medical interventions can be used to prolong our life. If our view of quality of life has been permanently compromised, do I want treatment to prolong my life? Depending on my views on quality, dialysis, transfusions and a mechanical ventilator may be fine. For others it may represent a form of living torture.
The comment Carmen and I heard most from seniors about end of life medical intervention were related to “quality of life.” We heard lots of “I don’t want my life prolonged if I don’t have quality of life.” But when we drilled down on what quality was, the answers seemed hard to put in practice. We heard things like:
CarePlanIt has exercises in the form of a workbook that you can do to see where you might fall regarding this issue.
Question 6: How do I want others to treat me at time of death?
Do I want visitors? Do I want forgiveness? Am I offering forgiveness?
An area that often gets overlooked in most ADMs is how we want others to treat us at time of death. If we fear the possibiolity of a failing consciousness at time of death, we want to say our goodbyes to our family when we are relatively healthy, wealthy and wise. For others, it may be important to have our loved ones and extended family at our bedside at our time of death regardless of whether we recognize them or remember their name. If we our religious, we may want our family and members of our Church present and praying for our soul. We may want reminders of our family near us in the form of pictures, videos, and recordings.
There are other ways we may want people to treat us a well. Please see the Five Wishes website for additional details about their approach.
These things can also be added to any ADM.
Question 7: What do I want others to know?
Another area that often gets overlooked in most ADMs is what we want others to know at our time of death. This may include things like a desire for other’s to know that I forgive them for things they have done, or a wish that I be forgiven for things I have done. We may want others to know that I am ready for death and not afraid, or that I will be afraid and hope they will be with me at my time of death. We may want others to remember me when I was stronger and more vibrant, not how I look now. I may also want others, especially those that attend my memorial service, to know specific things.
There are other things I may want people to know as well. Please see the Five Wishes website for additional details about their approach.
Keep In Mind What Medical Professionals Want
The healthcare industry is 18% of our economy. It’s huge. The previously discussed issues are all about you and your wants. However the sheer size of the healthcare industry means they will create documents that protect them from legal liability. They use the same documents you would use. But they are often simplified, allowing them to provide life preserving treatments and services. Their documents don’t lock you in forever, they can be revoked and changed.
For example, skilled nursing homes will ask you to sign a simple Advance Medical Care Directive, often described as a Living Will, that authorizes them or first responders to use CPR and rush you to the hospital if you’re ill. You can choose to deny CPR, but almost no one does initially. You may realize over time that your ninety-five year old mother may find efforts to revive a stalled heart like manual chest compressions or electric paddles painful, harmful, terrifying, and unwarranted. In the interim, the nursing home doesn’t want you mother to die on their watch.
There’s nothing wrong with this bias. If you can’t clearly describe and document what you want regarding life-sustaining treatment, why should a professional or institution.
The law recognized your wishes and your documents. If you let professionals know you have end of life documents and present those documents as the law prescribes, your documents are much more likely to be followed.