Advance care planning is a process that individuals engage in to think through their preferences about comfort care, quality of life, and end of life decision making.
- What is Advanced Care Planning?
- What are Major Decisions that could come up near end of life?
- What is hospice care?
- What is palliative care?
- What is POLST?
- How do I choose someone as my health care proxy?
- How do I make an Advance Care directive?
- Once I have made an Advance Care directive what should I do with it?
- Can I decide to stop cancer treatment?
- Who can my family consult if they are uncertain about what to do?
For many people this is a topic that is avoided because of the psychological discomfort that can come when thinking about the possibility of life ending or something tragic happening. It is something that everyone should take the time to do whether healthy or dealing with a life threatening illness. Advance care planning is like a free insurance policy to help make your end of life be what you want it to be and to make certain that those who might have to speak for you understand your values, wishes, and desires.
There are five important parts of Advance care planning:
- Thinking through your current situation and future situations and what your values and goals are regarding life and end of life.
- Discussing your values and goals with others that may be involved in this process with you such as family members, significant friends, and your medical team.
- Deciding on someone who you believe understands your goals and wishes to speak for you should you not be able to speak for yourself. This person becomes your health care power of attorney or proxy.
- Translating your goals and wishes into a legal document called an Advance care directive that appoints your proxy and also makes clear what kinds of decisions you want. You can also specify guidelines about how much medical intervention or non-intervention you might prefer under different circumstances.
- Review of your situation and adjustments to your advanced care directive as your life changes as a result of disease or changes in quality of life from a prolonged illness.
In a study sponsored by the National Institute of Aging (NIA) scientists found that advance directives can make a difference and that people who document their preferences in this way are more likely to get the care they prefer at the end of life than people who do not. Advance care directives and planning is not a one-time event, it should be a process that begins when we are young and continues to evolve as we see how our lives develop and how illness may be affecting us as we grow older. Advance care directives can be living documents that evolve as we develop. However, one of the most important parts of them is the identification of someone who can act on your behalf and help you in the event that you cannot speak. It is most important that the person to act on your behalf knows how you feel about the kinds of choices you would make if you were hospitalized or not able to answer for yourself.
They need to be able to answer questions such as:
- What is a good quality of life?
- Would you want your life to be extended under the present circumstances?
- How much risk would you be willing to take and for what benefits?
- When would you want medical intervention to stop and comfort care to be the primary goal of care?
- What are your goals for your life and are they achievable given the current circumstances and if not, what would you want done for you?
Before someone else can answer these questions, it is important for you to be able to answer these questions for yourself. There are many choices that can come up throughout the continuum of cancer care and in life and knowing your goals and expectations and what feels like a good quality of life are important in these decisions.
We encourage all of our patients and family members to use a cancer diagnosis, a cancer recurrence or the success of cancer treatment to be a point when these discussions begin, either for the first time or as a revisitation. It is important to make sure your advance care directive is up-to-date and that your doctors and hospital has a copy of it in your medical record. Consulting with your doctor about your current illness may be important as he or she may have knowledge about how the disease could develop and what kinds of future choices might need to be made. Engaging the physicians, nurses, social workers or psychologists who are part of the medical team managing your cancer can help you in formulating what to think about and plan for. Knowing what can happen does not mean that it will happen but taking a little time and energy to address this now, may prevent discomforts and worries in the future and relieve stress at a later time when these discussions could be more difficult for you and your family.
Sometimes there are important issues that arise as treatments no longer cure the disease or can hold the disease in a stable place in which the quality of life is acceptable to the patient. Sometimes there are emergent decisions that may come up, and it is important to think about what you might want done. Decisions that could come up include, cardiopulmonary resuscitation (CPR), to be put on a ventilator, to receive artificial nutrition through a feeding tube or artificial hydration (intravenous fluids).
For example, if you have widespread cancer and have already been through treatments that are not stopping the disease from progressing, would you want any of these activities to be done and under what circumstances, or might you prefer that you receive symptom management and comfort care?
CPR (cardiopulmonary resuscitation): CPR is used to restore your heartbeat if your heart stops or is in an abnormal rhythm that could be life threatening. CPR may be quite effective in a young and healthy person, but as you age and have more physical disabilities and medical concerns, the likelihood of your heart being restored to a normal rhythm is reduced. In addition, by using CPR, an easier route of death may be closed off to you, leaving you open to a more prolonged and uncomfortable death. These are important considerations. It is also important to understand what CPR means. It requires repeated pushing on the chest with force while also putting air into the lungs. The force can be quite strong and in the process may brake ribs or collapse a lung. Sometimes electric shock is used known as defibrillation and medicines are also used. Sometimes a plastic tube is put down your throat to force help force air into your lungs (known as intubation). It is not quite the way it appears on your favorite medical show on TV. It is much more intense and potentially brutal. If you are already more frail then it may not be successful and/or the damage may be greater. It is important to think about these things in advance because not doing CPR could mean letting you die quietly, naturally, and more comfortably. When it is decided that you do not want resuscitation, it is important to inform your doctors, and they can write a DNR order (Do Not Resuscitate order) in your chart and that will make certain this is not done while you are in the hospital.
Ventilators: Ventilators are special machines used to help you breathe. A tube is connected to a ventilator, and the tube is put through your throat down your trachea so that the machine can force air into your lungs. The medical term for this is intubation, which is an uncomfortable procedure. You will likely be kept sedated while on a ventilator because having the tube down your throat is painful and uncomfortable, and you are not able to talk. When you can’t breathe on your own for days and it does not appear that you can be weaned off the ventilator, a surgeon may perform a tracheotomy. This is a surgery done at the bedside with sedation and local anesthetic in which a small hole is cut into the neck and a tube is inserted into your trachea. The ventilator is attached to the tube in your neck, and this is considered more comfortable than having the large tube down the throat into the trachea. It still may be difficult to talk without a special valve on the tube that allows the air to go over the vocal cords. When a person is “trached” (which rhymes with “make”) the air enters the lung below the vocal cords. Again, being on a ventilator in real life does not look quite the same as it does in television or in movies.
Artificial nutrition: When someone is not able to eat, and their stomach is functioning, they are sometimes fed through a tube that goes down their nose and into their stomach. Sometimes if this is done over a prolonged period, a tube is surgically inserted into the stomach through the abdomen that allows liquid nutrition to be pushed through the tube into the stomach. There is also a kind of artificial nutrition given through a major vein in which a more permanent port is inserted into the vein, and the nutrition can be engaged at night and pumped in while you are sleeping. There are potential negative consequences to each of these options and if the body is shutting down and near death, these options may prolong death and suffering.
Artificial hydration: To prevent dehydration, fluids are frequently given through an intravenous tube into a vein. This can be very helpful during chemotherapy or other treatments when you temporarily cannot keep yourself hydrated. In these circumstances, artificial hydration is not only life preserving but also a comfort measure as well. However, at end of life artificial hydration can create other problems that might make breathing more uncomfortable, prolong the dying processing or increase suffering.
Comfort care: Comfort care is very important as most people will state that they are most afraid of suffering when dying. Comfort care can be many different types of care, all of which have as the goal to soothe you and keep you comfortable. It is supposed to relieve pain, discomforts, and suffering. Comfort care can be used to manage shortness of breath, nausea, anxiety, constipation, diarrhea, dry mouth as examples. It often means not doing unnecessary procedures that will increase discomfort. Comfort care is something that should be considered throughout the continuum of cancer care; however, there are times when the best care is the discontinuation of treatment to prolong life and a focus on comfort care alone. Comfort care might include being enrolled in home hospice, or on hospice in a nursing facility and sometimes also in a hospital.
What is hospice care?
Hospice care is a type of care that focuses on quality of life rather than on the prolongation of life. Hospice care is an option for patients and families to choose humane and compassionate care when a disease cannot be stopped and the goal is to make comfort the highest priority. Hospice is not necessarily a place, but a type of treatment. The focus is on both the patient and the family as a unit. Hospice care means choosing medical care necessary to alleviate symptoms, reduce suffering, improve quality of life and is usually the final stage of care in a serious illness.
The idea of hospice was conceived originally in the United Kingdom. Cicely Saunders is considered the founder of “Hospice.” She stated, “You matter because of who you are. You matter to the last moment of your life, and we will do all we can, not only to help you die peacefully, but also to live until you die.”
Hospice care emphasizes the comfort of physical discomforts as well as psychological and spiritual discomforts with the goal of helping patients and families to reduce these at a time when they know that life will be ending, although the time frame may be somewhat uncertain. Patients are best served on hospice when they have had some time to stop invasive medical treatments and to focus on comfort. Too often hospice care is referred just days before a death, and this is often traumatic for everyone involved. Sometimes hospice is not brought up by families or physicians. Sometimes there is a concern that “entering hospice care” is giving up. Another way to frame this is that hospice care is the best care available for the phase of the disease that you are dealing with at this time.
Hospice care can be done in the home or in a skilled nursing facility. There are a few hospice programs that are actual places. Hospice does not provide all the caretaking that a patient needs, but hospice does provide assistance to the family in making good decisions around pain medications and reduction of symptoms such as nausea or constipation.
What is Palliative Care?
Palliative care focuses on symptoms such as pain, shortness of breath, fatigue, constipation, nausea, loss of appetite, difficulty sleeping, anxiety and depression. It also helps you gain the strength to carry on with daily life. Palliative care can and should occur throughout the entire continuum of cancer care. It is more often associated with more advanced stages of the disease and is certainly a component of good end of life care. However, it should not be limited to this and it can happen alongside care that is oriented toward cure or stabilization of the disease as well.
What is POLST?
POLST stands for Physician Order for Life Sustaining Treatment,and it is a form completed by a patient and a physician and signed by both. POLST is a form that gives seriously ill patients more control over their end-of-life care. This form states what kind of medical treatment patients want toward the end of their lives. It is usually printed on bright pink paper, so that it can be placed in medical records and placed on the back of a door at someone’s home in the event the paramedics are called. It communicates information about resuscitation, artificial nutrition, hydration, other treatments, and comfort care. It also indicates the name of the health care power of attorney.
What are some good resources to review?
http://www.nia.nih.gov/ This is the government website for the National Institute On Aging and provides information on advance care planning.
http://www.coalitionccc.org/ This is the Coalition for Compassionate Care of California, A statewide partnership of regional and statewide organizations, state agencies, and individuals working together to promote high-quality, compassionate end-of-life care for all Californians.
http://www.capolst.org/ This is the California website and a place where POLST forms can be found as well as other information about compassionate end-of-life care.
http://www.caringinfo.org/i4a/pages/index.cfm?pageid=3289 This site provides information about writing an advanced care directive and provides legal documents by state.
How do I choose someone as my health care proxy?
Choosing someone to be your health care power of attorney or proxy is an important decision. It should be someone who knows you that you trust to carry out your wishes. You should appoint a secondary person in case the first person is not available. Your health care power of attorney can be your partner, your spouse, a good friend, or an adult child. It should be someone that you feel you can talk to about these issues, and they will understand what you need and want. You want someone who will consult with appropriate medical team members and be able to express your desires. It must be someone who is agreeable to carry out your wishes.
How do I make an Advance Care directive?
There are a variety of ways to create an advance care directive. Some people complete them as part of their estate planning and have their attorney complete them at this time.
Your hospital can provide you with a form to complete that when fully signed is a legal and binding document.
There are several forms that are available from different organizations that allow you to do this. Some of these are included the resource section of the document.
It is important to think about what you want and consider your current situation. Have a discussion with your health care provider if you are uncertain about the choices you may want to make or feel you do not have the knowledge to translate your wishes into achievable goals. Consider talking with an oncology social worker, chaplain, or psychologist at the Simms/Mann Center. Identify someone that you can rely on to make decisions for you.
Once I have made an Advance Care directive what should I do with it?
Once you have made your advance care directive, make certain that your doctor and hospital has a copy of it and request that it be placed in your chart. At UCLA request that this be placed in the electronic medical record. Make sure you review it with your doctor so that your doctor understands what you want.
Also make certain that the person(s) who is(are) appointed have copies of the document as well.
Can I decide to stop cancer treatment?
Deciding to stop cancer treatment does not mean stopping medical care. Sometimes it is appropriate to decide that anti-cancer treatments are not making life better and that you would prefer to focus on comfort rather than battling the cancer per se. In these situations, you might decide that you want to stop chemotherapy, radiation, or other targeted treatment or clinical trial, and instead focus on feeling as good as you can for as long as you can. These decisions are usually made when the cancer is not viewed as curable, and the goal may have already been to stabilize the disease. For some patients trying to stabilize the disease can rob them of their good quality of life, and they would prefer to have a shorter life with fewer complications of treatment. For other patients, they may have already had substantial treatments, possibly even exhausting all possible treatments before the decision is made to stop treatment. It is important for you really to think about what you want and what you like about your life and how best to achieve your goals for your life. It may be important to have an open and honest discussion with your physician about what is likely and what is not likely. This can require a degree of honesty with yourself about your situation. Most people who actively think about these issues and make these decisions tend to have better quality of life through the end of their lives and less suffering. This could be a discussion that happens from time to time through treatment between you and your doctor where you express your desires and goals and receive consultation about how realistic it is to achieve your goals or the best way to achieve your goals. If you are worried about these issues, remember that you can discuss them with a member of the Simms/Mann Team, an oncology social worker, a psychologist, or a chaplain. We can also help you to formulate your goals and needs and how to broach these issues with your physician.
Who can my family consult if they are uncertain about what to do?
Many hospitals have a team of individuals that help families make difficult decisions. At UCLA this team is part of the Ethics Team. It is made up of a variety of health care professionals. Families can ask for an ethics consult if they are concerned about the decisions that may need to be made or if there is disagreement among family members about what the patient wanted and what would be best for the patient. The ethics team tries to consider all viewpoints and is outside the treating team, thus able to provide a perspective that may help a family come to a difficult decision.
Some of the resources available at the Center that may be particularly helpful include: