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 nursing homes clarify healthcare related goals and make important decisions about medical treatment.
How do the goals of medical care relate to your Quality of Life in LTC?
Ethically, the general goals of medicine are to relieve suffering and to ‘First, do no Harm’. In addition, general nursing home goals often include: relieve pain, cure disease (when possible), prevent untimely death, maintain present health, educate and counsel residents/families about illness, and avoid harm while giving medical care.
It’s also important that each resident has personal goals, because they shape expectations and priorities, allowing us to make decisions based on our health.
Prior to choosing LTC, when someone is sick, that goal is usually ‘get better’. For those with chronic (long term) illness, the goal may be more focused on maintaining present health and level of comfort. And then, when a serious or terminal disease develops, a patient may seek ‘relief from suffering’ as their primary healthcare goal.
Choosing a healthcare goal might seem confusing at first because we may assume 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, being on a breathing machine permanently may not be your idea of a quality 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 goals, some treatments such as CPR (Cardio-Pulmonary Resuscitation), which are intended to help may actually cause harm. For instance, a senior with cancer and who has been seriously ill, will not benefit from CPR: it is considered ethically futile and harmful. Non-beneficial [futile] care is ‘care that has a less than 5% chance of survival’, or is ‘when desired goals cannot be reached’. Thus, since less than 5% of nursing home patients can be resuscitated, 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, no artificial fluids, etc.).
Almost everyone who has a Life-Limiting Disease (LLD: a disease which will usually lead to death, such as: heart failure; kidney or lung failure; certain cancers; AIDS; Alzheimer’s Dementia), once they know their condition is incurable, 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 do “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?
- First, know your current health status? (what health problems do you have)
- Next, find out what’s the prognosis (possible outcomes, or years of life remaining) for each of your problems. If you have a LLD, you and your family need to know that cure is no longer possible. If you don’t know the prognosis, ask your doctor and others knowledgeable about such problems.
- Then, based on what’s important to your quality of life, 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).
- Know that you may change your goals as your illness progresses, or with new 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
Knowing goals and choices before a situation arises, helps you create a plan and be prepared – improving everyone’s feeling 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 (and the potential benefits/risks) and decide which 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 family, develop a plan based on your choice (including what to do if that choice doesn’t result in what you hoped).
It’s important to ask yourself, “What activities am I willing to sacrifice to stay alive”; and “Can I live with my decision?” In choosing to live comfortably and not have a certain treatment, you may not only achieve greater comfort but it’s possible you may actually live longer. If you are uneasy with your choice (worried about your family’s reaction?), consider choosing a different option.
Finally, complete (or revise) an Advance Directive if you don’t have one and give a copy to the facility and to your doctor.
Our staff can help you and your family work through this process.
To help you on this goal-defining journey, we urge you and your family to read the following available materials: