Planning for the future is something many do everyday. Healthcare is no different. Every patient has the right to participate when deciding what kind of medical care is appropriate for them. This information is being offered to help patients and families in hospital clarify healthcare related goals and make important decisions about medical treatment.
How do the goals of medical care relate to your Quality of Life?
Ethically, the goals of medicine are to relieve pain, cure disease, prevent untimely death, maintain present health, educate and counsel patients about their illness and avoid harm while giving medical care. Personal goals shape our expectations and priorities allowing us to make appropriate decisions based on our health condition.
Usually, when a person becomes sick, the goal is to ‘get better’ so a patient can return to their previous quality of life. However, for those with chronic (long term) illness, that goal may change to maintain one’s present health and a desired level of comfort. And then, for those who develop serious or terminal diseases, they usually see relief from pain and suffering as their primary healthcare goal.
Choosing a healthcare goal might seem confusing or unnecessary at first because it is simple to say that everyone wants to ‘get better’. But, everyone’s circumstances vary and what’s important for your quality of life may be different from others; knowing ahead of time can help you decide on the most appropriate healthcare goal – so that you don’t receive treatments you don’t want. For example, you may feel that being on a breathing machine permanently is not the way to live the rest of your life and therefore this would not be your idea of a good quality of life.
One definition of quality of life is: finding an acceptable way to live in the most independent way possible with the least amount of suffering.
Helpful vs. Harmful Treatments
Depending on your idea about quality of life, some treatments such as CPR (Cardio-Pulmonary Resuscitation), which are intended to help may actually cause harm. For instance, a senior with an incurable cancer and who has been seriously ill, will not benefit from something like CPR. To receive CPR when it is not medically helpful can be viewed as harmful. Non-beneficial care is ‘clinical care that has a less than 5% chance of survival’ or is ‘when desired goals cannot be reached’. Thus, since less than 5% of such patients can be resuscitated successfully, by definition CPR is a non-beneficial treatment for them. (See handout “Allowing for Natural Death – Myth & Reality”.)
What are some examples of goals of care?
General goals can range from longevity – do whatever is required to keep me alive, regardless of the pain, suffering, or cost (usually includes CPR, respirators, organ transplants) – to the opposite extreme, comfort only – do only what will help me avoid pain/suffering (usually means no CPR, no respirators, etc.).
Almost everyone who has a life-limiting disease (a disease which will usually lead to death, such as: heart failure; kidney or lung failure; certain cancers; AIDS; Alzheimer’s Dementia), once they have information about their condition, asks that comfort be the main focus of care. That usually means A.N.D. (Allow Natural Death – in other words, no CPR, no respirator, no feeding tubes), but still “give me whatever is needed to control pain, nausea, shortness of breath, etc”.
There can also be specific or short-term goals of care such as, antibiotics for pneumonia or surgery to repair a fractured leg.
How do you determine your goals? What steps are involved?
1. First, know your current health status? (what health problems do you have)
2. Next, find out what’s the prognosis (outcomes or years of life remaining) for each of your problems. If you have a Life Limiting Disease, you and your family have the right to know that cure is no longer a reasonable expectation. If you don’t already know the prognosis, ask your doctor and others knowledgeable about such problems.
3. Then, discuss with your family what’s important to your quality of life and determine your general goal preference – comfort or longevity – and specific goals for selected situations (such as – would you want to go into hospital for pneumonia).
4. Know that your goals may change with progression of your illness or with more information. For example, your strength has been deteriorating and you need a walker to get to the toilet; you break your hip; your immediate goal is to continue walking, but after learning the surgery may not help you walk again, you might choose to control the pain with drugs and, after a week in bed, start using a wheelchair. Thus, it’s important to review your goals regularly with your family/caregivers and your doctor.
How your goals lead to informed decisions and appropriate medical treatment
Discussing your goals and what you would want, before a situation arises, helps you create a plan and be prepared – which improves everyone’s sense of security. (Families are sometimes reluctant to talk about these emotional issues, but having such discussions when everyone is calm and has an opportunity to be informed, results in better, more appropriate care.)
Whenever a situation does arise, you can review your treatment options with their potential benefits and decide which option best matches your goals. Inform your doctor about your goals and, if you haven’t already made a firm decision about what to do, ask him/her to recommend ONE option based on YOUR goals.
Then, with your doctor and hospice staff, develop a plan of treatment based on your choice (including what to do if that choice doesn’t result in what you hoped).
It’s important to ask yourself, “Can I live with my decision?” In choosing to live comfortably and not have a certain treatment, you may achieve greater comfort but it’s possible you may not live quite as long (though some actually live longer). If you realize you are uneasy with your choice (worried about your family’s reaction?), consider choosing a different option.
Finally, complete or revise your Patient HealthCare Directive & Physician Order.
Your doctor can help you and your family work through this process.
To help you travel along this goal-defining journey, we urge you and your family to read the following available materials, where relevant:
CPR vs Allowing for Natural Death – Myth & Reality Dementia – What Choices do You Have? Dehydration & Starvation – Myths & Realities Feeding Tubes – Myths & Realities Hank Dunn. Hard Choices for Loving People. 2001.A&A Publishers [www.hardchoices.com] Patient HealthCare Directive & Physician Order