When to Start
It’s never too early to start advance care planning. Everyone 18 years of age and older should have advance care planning conversations and document wishes in an advance directive because medical crises can happen at any age. When an adolescent turns 18 years old, the parent is no longer the decision maker and the law prevents healthcare providers from discussing issues with anyone other than the “patient” unless the patient gives permission or there is an appropriate advance care plan. Without the proper documentation, your family may have to go to court to be included in treatment decisions.
Review your advance care plan regularly if your health or situation changes which may include:
Serious Medical Diagnosis
While you can implement an advance care plan at any point in life, it is important to make updates upon receiving a serious medical diagnosis. Certain diagnoses may change how you would approach medical treatment and live your life. It would be beneficial to revise your advance care plan to reflect how you want to be treated with a new prognosis.
‘Serious illness’ is a condition that carries a high risk of mortality, negatively impacts quality of life and daily function, and/or is burdensome in symptoms, treatments, or caregiver stress. There is no single definition of what constitutes a “serious illness,” but there is no doubt that it raises serious challenges for the individual, their loved ones, and caregivers. The illnesses that the Centers for Disease Control and Prevention (CDC) attribute to the leading causes of death and disability include: heart disease, cancer, chronic lung disease, stroke, Alzheimer’s disease, diabetes and chronic kidney disease.
Serious illness affects every person differently. Some chronic diseases are disabling or require major lifestyle changes. Other diseases are managed over time. Most people diagnosed with a serious illness will live for several years with their condition.
In most cases, serious illness affects every aspect of a person’s life. This can include physical and mental health, family, social life, finances, and employment. Serious illness can also shorten a person’s life span. This is especially true if the disease is not diagnosed and treated properly.
The main goal – and challenge – is to ensure that you maintain a high quality of life. In some cases, providing more medical care can sometimes harm quality of life, and it can be difficult to determine what is appropriate. Any care decisions that are made should respect your wishes and allow you to have the best quality of life for the longest time available. Individuals with serious illness should have the opportunity to make their wishes known in a way that clearly informs doctors and family before interventions are made that may do little to help, and could even diminish quality of life. At least 12 million adults and half a million children in the United States are living with a serious illness. By 2035, the number of people over age sixty-five, 81% of whom live with multiple chronic conditions, will approach 78 million.
For more information on serious illness, visit:
- www.als.org
- www.alz.org/
- www.asbestos.com/mesothelioma/pleural/
- www.cancer.org/
- www.diabetes.org/
- www.heart.org/
- www.kidney.org/
- www.lung.org/
- www.stroke.org/
Decline in Functionality
Your values may change if your functional abilities start to decline. Review your advance care plan and make any changes to reflect your current preferences and goals of care.
Death of a Loved One
The death of a loved one can result in personal reflection on what matters most in life. This may cause changes in decisions for future medical care. Update your advance care plan to mirror what is currently most important to you.
Divorce
Most people assign their spouse as their health care representative. Individuals who go through a divorce should consider revisiting who has this responsibility to avoid possible conflicts.
How to Begin the Conversation
Talking to Family, Loved Ones, and Caregivers
A good quality of life starts with a good talk. We can’t predict when a medical emergency or serious illness is going to happen. However, we can prepare ahead for these events by talking about what matters to us with those who matter the most.
Talking with your loved ones about your health care choices can be difficult. But it doesn’t mean that planning and making decisions about future medical care can’t be a positive experience. It is a good opportunity to reflect on the things that are important and to make arrangements that suit you. Don’t wait for a medical crisis; talking now makes it easier to make vital medical decisions when the time comes. It is important to talk to your healthcare professionals, loved ones, and faith leaders about your health care choices.
The resources listed below will provide help and support in having these critical conversations with those who matter most to you.
- Ariadne Labs
- The Conversation of Your Life (COYL)
- The Conversation Project
- The Death Deck! game
- Death over Dinner game
- Hello game
- Planning Guide for Families, AARP
- Let’s Talk Advance Care Plan Guidebook & Video Series
- What Matters to Me resource workbook
Talking to Health Professionals
To put good plans in place, you will need to learn more about your condition and understand what you are facing. Your doctor will work with you to help you understand how your condition will progress. To help you begin the conversation, it is important to ask questions to learn as much as you can. The 4-Step iCare Plan can support you during this discussion. The 4-Step iCare Plan is an individualized, simple, 4-step approach to help you make difficult medical decisions.
Choosing a Healthcare Representative
A Health Care Representative (also known as a health care proxy, health care agent, power of attorney for health care, durable power of attorney for health care or surrogate decision-maker) is the person that you designate to speak on your behalf if you can’t make your own health care decisions. If you were unable to speak due to an accident or illness, your proxy would advocate for you. Most commonly, this situation occurs either because you are unconscious or because your mental state is such that you do not have the legal capacity to make your own decisions. You should confirm prior to appointing someone as your proxy that he or she will be willing and able to carry out your wishes.
Express your wishes to your health care proxy so that they do not have to guess about what you would want. Making your wishes known in advance prevents others from making difficult choices during a very stressful time. Your goals of care need to be discussed and documented in writing so there is no misunderstanding.
Advance Care Planning Decisions
There are many decisions to discuss with family, loved ones, and healthcare providers regarding life-prolonging measures. Being informed about the options can help you decide what best supports your values and beliefs.
Cardiopulmonary Resuscitation (CPR)
CPR is the combination of measures performed to attempt to get oxygen into your body and maintain blood circulation to the brain and heart in the event that breathing stops and/or the heart stops beating.
These measures may include: mouth-to-mouth resuscitation which may then require a bag, mask or a breathing tube. A tube may be put through the nose or mouth into the lungs in order to force air into your lungs. A ventilator or respirator (breathing machine) may be required as the next step.
Chest compressions are when the chest is forcefully pressed in order to pump blood from the heart into the rest of the body. Electric shock (defibrillation/cardioversion) may be used in an attempt to restore normal heart rhythm. Medications may be used to help restore normal heart rhythm and blood pressure.
How Effective is CPR?
- The effectiveness of CPR depends on previous health, the cause of cardiac arrest and how soon CPR is performed after the heart or breathing stops.
- The survival rate for CPR decreases when there are multiple illnesses present.
- CPR will not cure an underlying disease but may restore heartbeat and breathing.
- CPR is not likely to be beneficial if advanced life-threatening illnesses are present.
- Cardiac arrest is usually the final step in the body’s natural process of aging leading to death.
CPR Survival Rates
- The evidence overwhelmingly shows that CPR is not able to restore most people who are at the end of a life-threatening illness to their previous level of functioning. On television, CPR is not shown quite accurately—in real life, the process is more intense with lower success rates. When a person is in failing health from a serious or progressive illness, CPR has little chance of success. Results may be only partially successful and temporary.
- CPR for hospitalized individuals is associated with poor outcomes, as the cause of arrest is usually associated with advanced chronic illness rather than an easily reversible heart or breathing failure.
- Even if CPR is successful, there may be lasting health complications including, but are not limited to: ventilator use from weakened lungs, bruised/broken ribs from chest compressions, and brain damage from lack of oxygen.
- Resuscitation can save lives but factors like age, health, and underlying illness, can affect the outcome. It is best to discuss your goals for resuscitation with your healthcare professional to understand more about the risks and benefits of such actions.
Artificial Nutrition and Hydration (ANH)
ANH is a treatment intervention that delivers nutrition and fluids (hydration) by means other than a person taking something in his/her mouth and swallowing it. The nutrients and fluids used for treatment are chemically balanced and delivered through a feeding tube placed in the gastrointestinal tract or by intravenous (IV) administration.
While artificial nutrition and hydration can help people recover from illness or surgery, it can increase suffering for people at the end stages of life. For individuals near the end of life, ANH is unlikely to prolong life and can potentially lead to medical complications and increase suffering. When individuals can no longer eat or drink, it usually means their organs are shutting down. Their bodies cannot function the way they did when they were healthy and artificial nutrition and hydration cannot return them to a healthy state.
Decisions about ANH need to be based on an impartial look at what, if any, benefits will occur, what side effects and burdens are likely to occur, and what the individuals’ and families’ goals are for the treatment.
Help with Breathing
Shortness of breath or breathlessness (dyspnea) is common in people with serious or advanced illness. It makes breathing difficult and uncomfortable and it can cause a lot of suffering. Dyspnea can be distressing for both the individual who has it and their family so it is important to understand the scope of this symptom and the ways it can be treated.
There are many causes of dyspnea. It can occur due to lung problems such as chronic obstructive pulmonary disease (COPD). It can be a symptom of other health problems such as heart disease, cancer, or neuromuscular disease. And it may occur as any terminal illness gets worse.
The main goal of treatment is to help the person breathe more comfortably. To do this, medicines and other therapies are often used including: oxygen therapy through a nose cannula or mask, medication to ease pain, and other medicine to relieve problems that can occur with dyspnea such as anxiety.
Intubation with ventilation is for individuals who are severely ill and not able to breathe well on their own. It is used when other methods of treatment are no longer working. The procedure is performed in the hospital and the individual will remain in the intensive care unit (ICU) throughout the ventilation process.
With intubation, a tube goes into your mouth or nose, down your throat and into your windpipe. It is connected to a machine called a ventilator which pushes oxygen into your lungs to help you breathe and sustain your heart and kidneys so they can work properly. You cannot speak or swallow. Because this tube can be quite uncomfortable, people are often sedated with very strong intravenous medicines. Being on a ventilator is an aggressive treat which inhibits your ability to talk or swallow.
If the person needs ventilator support for more than a few days, the doctor might suggest a tracheotomy. This tube is then attached to the ventilator. This may not require sedation but can carry risks, including a collapsed lung, a plugged tracheotomy tube, or bleeding.
Survival with mechanical ventilation depends not only on the factors present at the start but also on the development of complications and individual management in the intensive care unit.
The use of ventilation during end-of-life care should be evaluated by carefully considering the goals of care and discussing with loved ones and your healthcare professional.
Dialysis
Dialysis is a treatment used when your kidneys are no longer working. One essential job of the kidneys is to filter excess fluid and waste products out of your blood so that they can be eliminated from your body. When this function is inhibited, dialysis must be used. In dialysis, you will be hooked up to a machine that slowly removes blood and filters it, then recirculates it back into your body. This process of being connected to a machine occurs for several hours, multiple times per week. Dialysis can be a temporary measure, but if your kidneys have failed, you will need to have dialysis treatments for your whole life.
Dialysis does increase your chances of living longer with kidney impairment. The treatment will allow you to feel better and more mentally alert. Although dialysis can be beneficial, there are some obstacles. It can be burdensome and inconvenient to receive treatment. Additionally, as a ‘treatment’ and not a replacement for normally functioning kidneys, there may be times when you may feel unwell. Dialysis patients also have to closely monitor their diet and fluid intake to not cause complications.
Stopping or not starting dialysis is called “conservative care” or “medical management.” This type of care can meet different goals depending on your specific needs and overall health. It can involve managing symptoms with certain medicines and diet. This approach is also known as “palliative care.” Talk with your healthcare professional for more information.
