Making decisions about health care can seem overwhelming at times. The issues are often complex and involve subjects that we’re not used to thinking about in our day-to-day lives. The intensity of decision making is magnified when life-threatening illness is involved. The stakes feel very high for every choice that arises.
If you are dealing with life-threatening illness, you’ll face many decisions, and not just about tests and treatments. You may, for instance, be deciding whether to stay at home or move to a hospital, or how to approach challenges with eating and drinking. All of these decisions can feel complicated and difficult. This article has some ideas about how to make the decision-making process more manageable.
Almost all decisions related to health care in palliative situations can be approached by using the following framework:
- Be informed about the issues being considered.
- Determine the goals for whatever is being considered.
- Determine whether the hoped-for goals are possible to achieve and plan an approach accordingly.
Be informed
Information is the foundation on which we build our approach to health care decisions. You and the health care team must be as informed as possible about what is being considered, and about the potential outcomes of different choices. You’ll also want to find out as much as you can about what is happening with the illness. The health care team has a role in helping explore various “What if…?” scenarios with you, explaining what might be expected for each choice that is made.
Determine the goals
From a strong foundation of information you can begin to explore the choices about tests, treatments, and other health care considerations. This exploration should be guided by the goals that you are hoping to achieve. In a way, goals are like a lens that focuses our thinking. The question “Should I do this…?” may best be answered with “That depends. What do you hope to achieve?”
Content reviewed July 15, 2015
Avoid assumptions
Unless goals are openly and specifically discussed, we can make incorrect assumptions about the hopes and expectations of others. For example, a patient may be assuming that chemotherapy is being given with the goal of curing a cancer, while the doctor may be hoping to decrease its size or slow its progression. The doctor may have used the word “treatable,” intending to convey that the cancer will be reduced with treatment, however, the hopeful patient and family interpreted this word to mean “curable.”
The role of the health care team
The health care team will play a key role in providing information related to technical or medical issues. For example, they may review and explain test results or help explore treatment options such as medications, radiation treatments, or surgery. Sometimes families will want to try a particular treatment in hopes that it will improve certain symptoms. The team will be able to provide insight into whether that goal is medically possible.
The role of the patient and family
Some goals cannot be measured by the health care team. For example, only the patient can say whether a specific treatment provides more energy or makes it easier to breathe. As a result, the health care team must look to the patient and family for insight into whether certain treatments make the patient feel better. Likewise, only the patient and family can voice goals relating to their own values or belief systems. The role of the patient and family is to bring these goals forward so that they can be considered in the decision-making process.
Whose goals are they?
For most people living with terminal illnesses, a time usually arises where they would not want further tests or treatments. However, if someone is not well enough to take part in discussions about care options, family members may be asked about whether they feel it is time to limit certain treatments such as antibiotics or blood transfusions, especially when death is near. Making decisions for someone else comes with a tremendous sense of responsibility. Family members may sometimes feel as though they are deciding whether their loved one lives or dies, when in fact this outcome has been determined by the illness. Questions about limiting treatments in such situations are focused on how to ensure the best possible quality of life as death nears. Rather than thinking of such choices as “What do I want done for them?” try asking, “What would they want done?” By keeping mindful of the person’s goals, family can feel assured that they are making choices that their loved one would make.
See also: Health Care Directives
Determine whether the goals can be achieved
Now that you’ve set some goals, the next step is to find out whether they can be achieved. There are three potential scenarios for every goal:
• The goal is clearly achievable.
• The goal is not possibly achievable.
• There is uncertainty about whether the hoped-for goal is achievable.
Achievable goals
Some goals are clearly achievable under most circumstances. Using antibiotics to treat a simple infection in an otherwise healthy person is an example of a treatment that will usually achieve the hoped-for outcome of eliminating the infection. In such circumstances, when there is informed consent of the patient or a substitute decision maker, the treatment is usually provided.
Unachievable goals
Sometimes goals are just not achievable. For example, it is not possible to re-start (resuscitate) someone’s heart which has stopped beating due to overwhelming shut-down of multiple body systems because of a progressive terminal condition. When body systems can no longer support life, resuscitation will not work. In such circumstances, the treatment should not be attempted. Providing treatments that cannot possibly reach their intended outcomes is not consistent with generally accepted standards of health care. The health care team’s role is to explain the situation and explore alternative approaches with open and frank dialogue. Through such discussion, the family and the health care team may decide to set different goals for what they hope to achieve. If there is conflict there may be a role for second opinions, consultation with specialists in medical ethics, or mediated conflict resolution.
Goals surrounded by uncertainty
There may be uncertainty about whether the hoped-for goals are achievable or whether interventions will help as much as expected or hoped for. For example, someone may wonder if a blood transfusion will give them more energy, or whether an infection will respond to antibiotic treatment. In such circumstances, it may be worthwhile to consider a time-limited trial with these parameters:
• clearly defined and agreed upon hoped-for outcomes, and
• a specified time at which to reevaluate the path taken, and
• a plan for an alternative course of action if things are not unfolding as anticipated.
In conclusion
This approach to making decisions can be time consuming and emotionally challenging, as it involves open and direct exploration of possibilities that we aren’t used to talking about and which may even feel frightening. You’ll need to understand the current situation, what you hope to achieve, and what options are available to you to bring about the desired result. However, by exploring the issue thoroughly before you make a decision, you may reduce some of the anxiety and confusion that sometimes surrounds the decision-making process. You may find that you’re more confident that the decisions you make are the right ones for you and your family.
See also: Considerations for a Home Death; When Death is Near
Content reviewed May 2019