Throughout the history of the world, humans have sought to have a good death. What that means is different for every person, based on his or her values and beliefs. Some people will be able to plan their deaths, spending their last hours with loved ones who know exactly what they want at the end of their lives and following their wishes. Others may not be able to let their medical team or their loved ones know what they want at the end of their lives. For others, illness may come quickly and they may not have thought about what they value at the end of their lives. It may be hard for family members to make decisions for them. In some cases, there may be disagreement among family members about what their loved one would want at the end of life. Even for people who have thought about the end of their life and planned for it, circumstances may arise that they had not anticipated.
At ProNobis Health, we know that planning for the end of your life can be very frightening, particularly if you are battling a serious illness. We want to help you think about some of the important considerations, particularly how your personal values influence your end-of-life decisions. We want to provide you with information and help you explore some of the options in light of what you find important. We want to help you plan, as much as possible, for a good death as you define it. What we offer here is an overview of what we think are some of the important considerations at the end of your life.
Advance Care Planning
Advance care planning is the process of talking with your physician and thinking about what you want at the end of your life and then completing an advance directive. Advance directives are legal documents in which you designate someone who knows your values and desires to speak for you if you are not able, and record your wishes in written form.
Medical Power of Attorney
Designating someone to represent you and your wishes if you are unable to do so is called giving that person medical power of attorney (also called health care proxy or durable power of attorney for health care). This gives the person you designate legal authority to make decisions for you in the event you are temporarily or permanently unable to make them for yourself. This includes consenting for procedures, deciding about implementing or withdrawing medical interventions, and cardiopulmonary resuscitation (CPR).
The second part of an advance directive is called a living will. This is a legal document that gives specific instructions to your health care team and your proxy about your desires. The legal requirements for a valid living will vary from state to state. You can download the form from the National Hospice and Palliative Care Organization that is specific to your state here. You do not need an attorney to complete a living will, but in order for it to be legally binding, you have to use the forms required by your state and follow your state’s requirements about witnesses and notaries.
Most living wills that you can download are very broad and may not capture your personal values. This is why it is important to talk with your physician and health care agent about your values and what you want at the end of your life, and to also write out what you value and what is important to you.
Communicating Your Values
There are many different ways to communicate your wishes to your loved ones and the person you have given medical power of attorney. Some people try to anticipate specific scenarios and specify exactly which medical interventions they would accept or decline and under what conditions. These may be interventions like feeding tubes, ventilators, or CPR. Other people don’t want to restrict their representative in making decisions, and prefer instead to communicate broadly about what is important to them. This can be goal oriented, such that specific medical interventions would be accepted or declined based on whether or not they would likely achieve a goal. These goals can be important values, such as living independently or being free of pain. For patients who have chronic medical conditions, such as kidney failure requiring hemodialysis or a heart condition in which they are dependent on a pacemaker or defibrillator, it may mean deciding when to stop these interventions or turn the devices off. It can be hard to foresee every possible circumstance and give specific directions. Communicating openly and honestly about what makes life valuable for you, and under what circumstances you would rather not have any further medical interventions, can help your health care agent accurately represent your wishes.
Specific Interventions to Consider
Although there are multiple specific circumstances in which your medical power of attorney for health care and your living will can determine your medical treatment, a few deserve discussion.
Chronic Life-Sustaining Therapy and Treatments
Many people take medications, undergo procedures, such as hemodialysis, or have implanted devices like pacemakers or defibrillators, that sustain or support their life. For some people, stopping these medications, interventions, or devices will end in death. For others, it will increase the risk of death, but not necessarily lead to death in the short term. Deciding when to stop a medication, procedure, or device can be difficult and should be made with input from your physician and loved ones. As with all life-sustaining treatments, consider the benefit of the treatment in terms of achieving what you want it to achieve, as well as the burden it places on you.
Some people at the end of their lives may decide that if they get a life-threatening infection, they will not treat it with antibiotics. Instead, they may decide to be kept comfortable and let nature take its course. This is particularly true for patients with chronic infections in which antibiotics do not really cure the infection but rather control it, and for patients in which the source of the infection cannot be safely controlled. Patients who are immunosuppressed and at the end of their lives may decide not to be treated with antibiotics. The same is true for patients who have multiple simultaneous infections. Remember that you can decide not to treat an infection, or to stop treating an infection, if it seems like your life goals are not being met. When deciding to stop antibiotics, or any medication or intervention, make sure there is a plan in place to address the consequences of stopping the medication or intervention. This is where your physician can help you anticipate the consequences and put a plan together for symptom management.
Do Not Resuscitate (DNR)
Broadly speaking, a do-not-resuscitate (DNR) order means that if your heart stops working—whether there is a problem with your heart itself, or another organ, such as your lungs, affects your heart and causes it not to work—no medical intervention will be initiated. Interventions that are normally instituted if someone’s heart stops functioning may include intubation, medications, chest compressions (cardiopulmonary resuscitation or CPR), and/or electrical shock. Intubation is the placement of a plastic tube into the wind pipe (trachea), which supplies oxygen to the lungs. When a person is intubated, they are also on a ventilator. Sometimes ventilators are referred to as life support. Medications are used to help the heart work, mostly by helping it pump effectively. Chest compressions (or CPR) is a way of manually pumping blood to your brain and other parts of your body when your heart is not able to do it. CPR involves pressing firmly on the chest, over the heart, in order to squeeze blood out of the heart and into the body. Electrical shocks are delivered to the heart in certain circumstances to restart it.
Resuscitation usually takes place as part of a code, sometimes called a Code Blue. You may hear people speak of code status, which refers to whether or not the person wants to be resuscitated if his or her heart stopped working. Some people will accept some parts of resuscitation, such as medications, but do not want to have chest compressions or electrical shock. This is sometimes called a partial code. Some people are also willing to be resuscitated if there is a reasonable chance they will recover function, such as if they have a sudden irregular heart rhythm that can be reversed quickly. Other people, who may have an underlying terminal illness or be at the end of their lives, will decide that if their heart stops working, they will let it be and not try to restart it. You, your doctor, and your loved ones can decide together about resuscitation and what parts, if any, are in keeping with your values.
Intubation and Ventilators
Intubation means placing a breathing tube into your windpipe in order to get oxygen to your lungs. You are connected to a machine called a ventilator, which does the work of breathing for you. Ventilators have been called life support machines. The decision about intubation may be separate from the decision about resuscitation, depending on what your underlying medical condition is. Intubation is usually a way of temporarily supporting your body until it recovers. This can be because of an infection or problem with the lungs or some other part of your body that has affected your lungs such that you need help breathing and getting enough oxygen.
For many people eating is a big part of life’s enjoyment. Meals shared with loved ones can be great sources of joy and expressions of love. If you are either too sick or too weak to eat, either by feeding yourself or having someone else feed you, you may have to decide about artificial nutrition and hydration. This is most commonly delivered by a tube either through your nose or mouth into your stomach or intestine, or through the skin on your abdomen. These tubes are often called feeding tubes. Artificial hydration and nutrition may also be given intravenously. Often these feeding tubes or special IVs are placed when people are so critically ill they aren’t able to eat. The feeding tube is a way of supplying nutrition until the person gets enough strength back to eat by themselves.
Deciding that you do not want artificial nutrition or hydration is also a way of dying if you have decided that you are at the end of your life. If you are too weak to eat or drink, and the only option for supplying nutrition and hydration is a feeding tube, you may decide that this means your body is shutting down. In some cases, continuing hydration and nutrition may lead to further suffering by prolonging the person’s life. Stopping artificial hydration and nutrition is an important decision that you can make along with your doctor and loved ones. It may be helpful to think of artificial nutrition that is provided by a tube as another medication, since it is more like medication than what we think of as food.
Some people at the end of their life develop an acute problem that would typically be treated with surgery, such as a severely ill person with heart disease who develops an unrelated infection in his or her gallbladder. Some diseases cause complications that in some circumstances can be treated surgically, such as a bowel obstruction in someone with a gastrointestinal cancer. In any event, the decision to have surgery when you are critically ill from a cause not directly related to the problem that surgery is intended to address is very difficult. It can be difficult to weigh the pros and cons. One question to consider is whether surgery will improve your quality of life, and if so, at what cost. This may be a helpful way of considering your options.
Withholding and Withdrawing Treatments
There may be treatments which your doctor tells you that you are not a candidate for, either because they will not be beneficial to you, or because they will be harmful to you, or potentially both. There may be treatments in which no one knows whether they will help you or not. For example, you may have severe lung damage and be very sick. Doctors may not know if intubating you and putting you on the ventilator will help or if you will continue to get sicker despite being on the ventilator. There may be treatments that you started when it looked like you would get better, but you have gotten worse.
A few things are important to remember here. First, you can decide to stop an intervention at any time. Your doctor may not know if an intervention will be beneficial or not, but you may decide to initiate it and see if it helps you recover. You and your doctor may decide to try it for a period of time. If it is not beneficial, you can decide to stop the intervention, even if it is life sustaining. This includes nutrition, hydration, ventilation, and medication. As long as you have decision-making capacity, you can refuse, decline, or withdraw any medical intervention at any time, even if it means you will die as a result.
Making Treatment Decisions
When making treatment decisions, regardless of whether it is for a potentially life-sustaining intervention or not, think about what you want the treatment to accomplish and when you would want to stop the treatment. This is sometimes called the benefit-to-burden consideration. This is really the most important time to consider your values and what your life means. There is no right or wrong answer. The benefit of any medical intervention is deeply personal and reflects what good you expect or hope to get from it. Do you hope to live to see your daughter get married in a month? Do you hope to live another 20 years, at least? Do you hope to have a quick and painless death?
The other part of thinking about any medical intervention is to determine the burden that comes with it. This is sometimes called risk or cost of an intervention, not necessarily in monetary terms. Every intervention, no matter how trivial it seems, has an associated burden, be it real or potential, trivial or major. Surgery, for instance, will almost inevitably, at least temporarily, bring about additional pain. Being hospitalized may be a major burden for some in that they lose their independence. It is important not to think of yourself as the burden, but rather the intervention you are considering. Burden, like benefit, is framed in terms of your values, what is important to you, and what you want for your life. Balancing burden and benefit will help you arrive at the right decision.
Sometimes people talk about quality of life rather than quantity. This means that the benefit you hope to gain is measured in terms of the quality of your life as you determine it. You may want to be able to live independently, to not have to spend the rest of your life in a nursing home, or to be as functional as you once were. Regardless of the benefit you hope to achieve, think about what it is and discuss it with your doctor and your loved ones. Similarly, think about what burden you are unwilling to tolerate. Is it being on dialysis for the rest of your life? Is it not being able to live independently? Is it being in pain? Just like benefit, burden will guide you in making the right decision for you.
Palliative care teams assist your primary treatment team in managing your pain and other symptoms related to your disease or treatment. They can also help by talking with you and helping you make decisions consistent with your goals and values. One of the main goals of palliative care teams is to improve the quality of life for their patients. Any person with a serious illness, regardless of life expectancy or prognosis, can receive palliative care. Palliative care is intended to assist your primary team, not replace them. Palliative care does not mean that you are stopping treatment or giving up. It also doesn’t mean that you are near death. In fact, most people who are cared for by palliative care teams are undergoing curative treatment. The team often includes a palliative care physician, nurse, social worker, and chaplain.
Like palliative care, hospice care focuses on management of pain and other symptoms related to illness; however, it is intended specifically for people in the final phase of their lives— usually people with a terminal diagnosis and six months or less to live. Hospice is typically initiated once you decide that the burden of further curative treatment outweighs any benefit. This does not mean that you would not receive medication to manage pain and other symptoms. Hospice care provides comfort not only through pain and symptom management but also through psychosocial and spiritual support. Hospice care may be delivered in your home or in a facility.
Choosing a Hospice
Once you decide that hospice care is right for you, the next step is choosing a hospice. Ask which services the hospice provides, as well as what family and caregiver support is available. If hospice care is provided in your home, ask which services are provided after hours and who should be contacted if there are questions. It is also important to find out what tools the hospice will use to provide comfort.
Because hospice care is paid for in large part by Medicare, the Centers for Medicare & Medicaid Services (CMS) compiles information about hospices. This includes percentages of diagnoses such as cancer, dementia and stroke that the hospice cares for; family experience of care; and quality of care. You can access this information on CMS Hospice Compare.
A person’s spirituality may become important to them at the end of their life, even if it had not previously been. You may want to talk with someone about your legacy in the world, what your life has meant, and whether there is an afterlife and what it may look like for you. If you have been spiritual during your life, you may find that intensifying, or you may have mixed and confused feelings. Wherever you may be in your spiritual life, there are many resources available. Chaplains are often in important part of palliative and hospice care teams. If you have to make difficult decisions about stopping a life-sustaining or curative treatment, you may have concerns about the moral aspects of your decision. Perhaps you would find comfort in having a spiritual person pray with you or read from a meaningful book. As much as physical care may help in controlling pain and symptoms at the end of your life, spiritual care may also help you to be more comfortable and find peace.
Medical Aid in Dying
Medical aid in dying (MAID), also called physician-assisted death or physician-assisted suicide, is a process, legal in several states, whereby an individual with a terminal diagnosis and less than six months to live, after consultation with physicians and family, can be given a prescription medication which he or she can take to end his or her life. For some people there are ethical and moral considerations when thinking about MAID. If you have questions about MAID, and whether it is legal in the state where you live, you can talk with your physician or contact one of the national organizations, such as Death with Dignity.