American culture is very cure-centric. When someone we know is diagnosed with a serious condition like cancer, we promote a message of hope for a cure: “I’m sure you can beat this!” “You’re so strong and positive, you’ll be okay!” “New cures are discovered every day!” In many circumstances this is a fantastic approach, motivating the person with the disease to remain optimistic and to follow through on treatments that can be difficult to endure.
But what about those times when a cure is not a realistic option? How do we react then?
There are many conditions which simply cannot (yet) be cured. Among these are dementia, Parkinson’s Disease, ALS, Huntington’s Disease, and some forms of cancer, just to name a few. How the family responds in these circumstances can have a huge impact on the person’s quality of life as they live with and try to manage the symptoms of their condition.
We as a society are ill-prepared to deal with or accept death. We avoid talking about it. We postpone important end-of-life planning because we don’t even want to think about it. And beyond death itself, many are even more squeamish about considering a time when they may be dependent on others for assistance with daily and very personal activities, like getting dressed or bathing. Because of all the discomfort around death and incapacity, it’s important to approach these issues carefully. Here are some tips to get started:
- Don’t deny the inevitable. It is heartbreaking to switch from “you can beat this!” to acceptance that a condition cannot be cured. A gentle but realistic approach can help. Focus
conversations on things the person wants (or needs) to do, people they want to see, and how they want to spend their time. Be open to conversations about end-of-life planning. Give the person opportunities to express their wishes. Take the opportunities you have to express love and tell the person how important they are to you and others. Find ways to help them continue activities they have always loved, and/or find new activities which are both meaningful and appropriate for their level of ability.
- Be proactive. Plan for what is to come. Get the person’s legal documents in order. Powers of Attorney will create a clear decision-making chain of command if and when the person cannot make their own financial or care decisions. A Last Will and Testament will enable the person to decide what will happen to their property after they pass away. Advance Directives empower the person to make decisions about what kinds of medical treatment they do or don’t want as their condition progresses. Establishing or updating these documents can open the door to family conversations about each other’s preferences and desires and can get everyone on the same page regarding future medical decisions.
- Talk about treatments and tests. Because of our cure-centrism, it can be tempting to treat and test everything, including secondary conditions that appear (e.g. a tumor in a previously healthy part of the body). If a person already has terminal cancer, ask yourself: is it really a good idea to do a biopsy on a new tumor? What question would the test answer, and how would that answer impact decisions about the person’s care? Would it change anything? At some point, treatments and tests can reduce quality of life rather than improving or extending it. From both a financial and a care perspective, it’s best not to subject a person to unnecessary procedures.
- Consider quality vs. quantity. On a related note, think about how treatments for the primary condition impact the person’s quality of life. Life-extending treatments are available for many conditions – but what is the cost? Money may not be an issue, but quality of life should be. One very good month with few side effects of treatment may be preferable to two months feeling ill due to treatments. The person with the condition and their family should clearly discuss their priorities and wishes. In some cases, quantity of time may in fact be the priority; but it should not be assumed that duration of life is everyone’s top priority.
- Bring in professional help. This is last but absolutely not least. Professional help can come in many forms, depending on the medical situation and the needs of the family. Assemble a team of experts who can help your family through difficult transitions and improve everyone’s quality of life. Examples include: a care coordinator, hospice services, in-home caregivers, a financial advisor, a certified elder law attorney, a primary care physician, specialists for the person’s medical condition, and nonprofit agencies (e.g. Alzheimer’s groups) that support families dealing with the medical condition. Every person and every family has a different experience of the process of dying. Professionals who work with families in these situations have seen a wide range of scenarios, so through them your family can learn from the experiences of others. This will minimize missteps and maximize the quality of the time you have together.
Curing diseases is important, but it is not the be-all, end-all in caring for a loved one. Often it is much more beneficial to focus on maintaining quality of life, which may be at odds with pursuing treatments. Families dealing with these difficult situations should keep the lines of communication open and work with experienced professionals who can help them navigate this unfamiliar and uncomfortable territory. By focusing on care, the person with the disease and their loved ones may enjoy much better quality time with one another, even if that time is limited.
Image © Anna Dudko