On End of Life Care
Charlie recently died on home hospice. It was my favorite death ever, if there is such a thing. He loved to sing with his daughter and enjoy the company of friends. So when he started to turn that final corner but was still aware, she planned a party in his little apartment. There were meatballs in crockpots and streamers across windows. She made him a crown to wear and a sign celebrating King Charlie. People from the apartment building and elsewhere strolled in to grab a bite and greet their tired friend. She played the guitar and they all sang You Are My Sunshine and other favorites with the heartiest volume they could muster. There was dancing and laughing. Two days later he was gone.
If to a well-organized mind death is but the next great adventure, how do we get organized? With my patients, there are three documents I talk through to get organized for the end of life: a living will or advance directive, a POLST and a palliative care planning worksheet.
Living Will
An advance directive or living will is a legal document you usually prepare when you write a will. It designates who would make decisions for you if you incapacitated. It also has a statement about whether you would want "do not resuscitate" or if you would not want your life maintained in a "vegetative state."
Advance directives serve an important legal purpose but as a doctor, they give me little guidance. By the time you are in my hands, who is making decisions for you is usually clear. In a sudden health event, paramedics are our first line. They are trained to "do everything" unless they have a written physician's order not to. Most of us, if we are sick, want "everything" done. By "everything" we generally mean CPR.
Understanding CPR
1. We only do CPR on dead people. CPR involves hard and fast chest compressions and electrical shocks to try and restart a heart that has a fatal rhythm. It may also require a breathing tube and mechanical ventilator, sometimes called "life support."
2. The risk of CPR is stroke. In a fatal heart rhythm the brain does not get enough blood which results in stroke. If CPR starts very quickly, like when someone is already in the hospital, there is a chance of quick recovery. If it takes a while to start CPR, like in a home, business or outdoor area, there is bigger chance of lasting stroke damage. Of all people receiveing CPR, 85% will die and 15% will live to leave the hospital. Of the survivors, 2% will be left with permanent stroke damage. Many more will have worse health and require long difficult rehab to recover.
3. The older or sicker a person is at the start of CPR, the more likely they will suffer permanent stroke damage. That may mean long term respiratory failure needing a ventilator, inability to swallow needing a feeding tube, and inability to speak or think clearly at all - a "vegetative" state.
4. Everyone has a living will. If you haven't documented otherwise, yours is eventually to die in a hospital bed with tubes and wires from your veins and airway with people pounding on your chest breaking ribs and forcing air into your lungs. That is the default hospital death in our country, death after CPR has failed.
5. Some people reach either very advanced age or severe health condition where they don't want CPR. They feel that if death is imminent, they would want comfort care and not run the risk of living with permanent severe stroke damage. Instead they can request, "Do Not Resuscitate (DNR)" and "Do Not Intubate (DNI)."
6. Paramedics are trained to do everything they can to save your life unless they have orders from a physician stating otherwise. That is the purpose of a POLST or MOLST Form.
POLST
If you wish to forgo CPR you must have a signed doctor's note stating "Do Not Resuscitate (DNR)." It should be written on a special form called the POLST or MOLST (Physician or Medical Order for Life Sustaining Treatment). This is usually a short form unique to each state where you can note "full code" or "do not resuscitate." For people who wish for only comfort measures in a life-threatening event, you can also indicate on a POLST to avoid artificial breathing or feeding via tubes. POLST forms are available online at www.polst.org. If you haven't done so, print your state and POLST or MOLST now and complete it. Ask your physician to co-sign it for you. Keep a copy in an envelope on your refrigerator and a copy in your wallet or purse.
Palliative Care Planning
As the end of life nears, other decisions are needed. Some people wish to only be treated for things at home and to forgo trips to the emergency room. This is especially true at the end of a long illness like heart failure or cancer when people are too tired and sick to endure further treatment. Sometimes a person tells family they do not want to carry on if severely demented. In these cases, families might choose to decline antibiotics for common infections and let nature take its course with comfort care only. Some people who are very old decline any form or surgery because the risk of anesthesia is too great.
How we feel about receiving treatment might change with our health status. In our current condition, we might want "everything" done. But if we have a serious illness affecting our quality of life, we might choose to forgo certain treatments. Or, if we were actively dying that might change our decisions altogether. In most illnesses like heart failure or cancer, there is a long stage of serious illness before actively dying. In the case of COVID-19, we might see a person progress through stages in a matter of hours or days instead of weeks or months.
In my palliative care worksheet, I have broken down one's wishes in each of three stages - current condition, worsening illness, and actively dying. Understanding and noting what decisions you would make will help your family or friend if they are called upon to make decisions for you. This worksheet is just a communication tool for patients and families, not a legal document.
End of Life Goals
One thing not addressed in a living will, POLST, or the palliative care worksheet is personal values and goals at the end of life. Would you like many people surrounding you or few? Are there things you wish to accomplish before you pass? There is a card deck called "Go Wish" that lists things that might be important to you when facing the end of your life. They can be rated as very important, somewhat or not very important. This provides guidance for your family and friends in how to help you achieve your end of life goals. The cards can be viewed free online at the website www.gowish.org.
Hopefully some of the above resources will be helpful to you but not needed soon! I hope for myself, my family and my patients, that every day will be filled with love like Charlie's until we begin our next great adventure.
If to a well-organized mind death is but the next great adventure, how do we get organized? With my patients, there are three documents I talk through to get organized for the end of life: a living will or advance directive, a POLST and a palliative care planning worksheet.
Living Will
An advance directive or living will is a legal document you usually prepare when you write a will. It designates who would make decisions for you if you incapacitated. It also has a statement about whether you would want "do not resuscitate" or if you would not want your life maintained in a "vegetative state."
Advance directives serve an important legal purpose but as a doctor, they give me little guidance. By the time you are in my hands, who is making decisions for you is usually clear. In a sudden health event, paramedics are our first line. They are trained to "do everything" unless they have a written physician's order not to. Most of us, if we are sick, want "everything" done. By "everything" we generally mean CPR.
Understanding CPR
1. We only do CPR on dead people. CPR involves hard and fast chest compressions and electrical shocks to try and restart a heart that has a fatal rhythm. It may also require a breathing tube and mechanical ventilator, sometimes called "life support."
2. The risk of CPR is stroke. In a fatal heart rhythm the brain does not get enough blood which results in stroke. If CPR starts very quickly, like when someone is already in the hospital, there is a chance of quick recovery. If it takes a while to start CPR, like in a home, business or outdoor area, there is bigger chance of lasting stroke damage. Of all people receiveing CPR, 85% will die and 15% will live to leave the hospital. Of the survivors, 2% will be left with permanent stroke damage. Many more will have worse health and require long difficult rehab to recover.
3. The older or sicker a person is at the start of CPR, the more likely they will suffer permanent stroke damage. That may mean long term respiratory failure needing a ventilator, inability to swallow needing a feeding tube, and inability to speak or think clearly at all - a "vegetative" state.
4. Everyone has a living will. If you haven't documented otherwise, yours is eventually to die in a hospital bed with tubes and wires from your veins and airway with people pounding on your chest breaking ribs and forcing air into your lungs. That is the default hospital death in our country, death after CPR has failed.
5. Some people reach either very advanced age or severe health condition where they don't want CPR. They feel that if death is imminent, they would want comfort care and not run the risk of living with permanent severe stroke damage. Instead they can request, "Do Not Resuscitate (DNR)" and "Do Not Intubate (DNI)."
6. Paramedics are trained to do everything they can to save your life unless they have orders from a physician stating otherwise. That is the purpose of a POLST or MOLST Form.
POLST
If you wish to forgo CPR you must have a signed doctor's note stating "Do Not Resuscitate (DNR)." It should be written on a special form called the POLST or MOLST (Physician or Medical Order for Life Sustaining Treatment). This is usually a short form unique to each state where you can note "full code" or "do not resuscitate." For people who wish for only comfort measures in a life-threatening event, you can also indicate on a POLST to avoid artificial breathing or feeding via tubes. POLST forms are available online at www.polst.org. If you haven't done so, print your state and POLST or MOLST now and complete it. Ask your physician to co-sign it for you. Keep a copy in an envelope on your refrigerator and a copy in your wallet or purse.
Palliative Care Planning
As the end of life nears, other decisions are needed. Some people wish to only be treated for things at home and to forgo trips to the emergency room. This is especially true at the end of a long illness like heart failure or cancer when people are too tired and sick to endure further treatment. Sometimes a person tells family they do not want to carry on if severely demented. In these cases, families might choose to decline antibiotics for common infections and let nature take its course with comfort care only. Some people who are very old decline any form or surgery because the risk of anesthesia is too great.
How we feel about receiving treatment might change with our health status. In our current condition, we might want "everything" done. But if we have a serious illness affecting our quality of life, we might choose to forgo certain treatments. Or, if we were actively dying that might change our decisions altogether. In most illnesses like heart failure or cancer, there is a long stage of serious illness before actively dying. In the case of COVID-19, we might see a person progress through stages in a matter of hours or days instead of weeks or months.
In my palliative care worksheet, I have broken down one's wishes in each of three stages - current condition, worsening illness, and actively dying. Understanding and noting what decisions you would make will help your family or friend if they are called upon to make decisions for you. This worksheet is just a communication tool for patients and families, not a legal document.
End of Life Goals
One thing not addressed in a living will, POLST, or the palliative care worksheet is personal values and goals at the end of life. Would you like many people surrounding you or few? Are there things you wish to accomplish before you pass? There is a card deck called "Go Wish" that lists things that might be important to you when facing the end of your life. They can be rated as very important, somewhat or not very important. This provides guidance for your family and friends in how to help you achieve your end of life goals. The cards can be viewed free online at the website www.gowish.org.
Hopefully some of the above resources will be helpful to you but not needed soon! I hope for myself, my family and my patients, that every day will be filled with love like Charlie's until we begin our next great adventure.