Your elderly mother has severe Parkinson's disease. She has trouble walking on her own and sometimes needs help with eating and dressing herself.
A recent visit to her doctor resulted in a diagnosis of stage IV colon cancer. The doctor recommends surgery to remove the tumor from her colon and surrounding organs as well as chemotherapy.
Surgery and chemo present a host of possible problems for your mom, including severe cognitive impairment and death. Chances of her living longer than six months are slim, even with treatment.
It's painful to watch your mother slowly succumb to the Parkinson's—her quality of life declines by the day. Treating the cancer would drag that quality down to an all-time low.
This is an example of a dilemma faced by many caregivers and their elderly loved ones.
What is the best course of action in this case?
According to a method of doctor-patient communication called, ‘shared decision-making,' it's the patient's (and, possibly their caregiver's) views that matter most when making these kinds of difficult decisions.
Charles Wellman, M.D., Chief Medical Officer for Hospice of the Western Reserve, feels that the foundation of shared decision-making is grounded in honoring patient values.
"Patients have different values, and, based on those values, they may have individualized goals of care that are specific to them," he says.
Shared decision-making is particularly important when dealing with seniors, a population that Debra Greenberg, Ph.D., a social worker in the geriatric division at Montefiore Medical Center calls, "the most heterogeneous group in our society."
Based on this line of thinking, the primary issue in the above example is: What's more important to your mother, potentially staying alive for a few more months; or living out her last days in as little pain as possible?
The caregiver's shifting role
Does your mother want you involved in the decision-making process? Is she willing to talk openly and honestly with you about the difficult issues surrounding her diagnosis?
A caregiver's role in shared decision-making is primarily dependent on the cognitive capabilities of their elderly loved one. Most often, when a caregiver is involved in the medical decision-making process, it's because a senior is too ill to make choices regarding their health care.
As Greenberg says, "It's the older persons' right to make informed decisions, unless there are instances where they can't."
Sometimes, even when a senior is capable of making their own judgments, they will want the caregiver to be involved for reasons including moral support, and wanting to keep the caregiver informed about their condition.
According to Wellman, caregivers can be a key component in the process, perhaps acting as a spokesman for their elderly loved one, and asking questions of bringing issues that the senior may not have considered.
The (newly) informed patient
What technical information regarding your mother's ailments and treatment do the two of you need in order to make the final decision on whether or not to go through with the surgery and chemo?
A well-informed patient is essential to the shared decision-making process. When research is done prior to a meeting, it enables doctors, patients, and caregivers to have informed dialogues and frees the doctor from having to discuss every detail of a given disease.
According to Greenberg, pre-appointment research can help patients and caregivers come up with important questions to ask their doctor.
The information surge catalyzed by the Internet has helped patients and caregivers become more well-informed by putting knowledge within reach of anyone with a computer and an internet connection. With a few keystrokes someone can research their diagnosis and possible treatments. They may even be able to connect with other people who have undergone similar treatments.
The main problem with an Internet-based approach is that anyone can post things online, free of charge and practically free of penalty. Greenberg says that the web has a wealth of good and bad information—but, the most important thing to consider when researching is, where the information is coming from.
If the material is posted by a well-known source, such as the Alzheimer's Foundation, or on a university website, chances are that it'll be accurate and up to date.
Deciding to decide
Is your mother willing to make this decision, or does she want the doctor, or the family to make it for her?
Research has shown that some people don't want to participate in a lengthy dialogue with their doctor about the pros and cons of prospective treatments.
An older adult may wish to defer to the medical expertise to their doctor. Many seniors grew up having a paternalistic relationship with their health care providers—the doctor is the dominant participant and the patient was supposed to comply with the suggestions of the professional.
A person's cultural background and family relationships can also play a role in who they want to include in the decision-making process. For example, Eastern cultures often place an emphasis on collective decision-making, allowing family members to weigh in before a conclusion is reached.
Indeed, Greenberg notes that she has seen instances where an elderly person chooses to let their family members weigh the risks and benefits and then allows the whole group to make the final decision.
A time and a place
How should the conversation begin? Do you want to speak with your mother alone first, or should the two of you get the ball rolling by meeting with the doctor as soon as possible?
Wellman laments that shared decision-making is happening "way too infrequently," in the medical community.
Not every health care decision needs to be addressed with lengthy discussions about patient goals and values, but many of the medical issues facing older adults are complex enough to warrant a sit-down dialogue.
Most doctors' visits are only about 20 minutes long, and don't leave enough time to devote to discussing a patient's values and treatment goals. In these instances, Wellman encourages seniors and their caregivers to speak up if they want to have a more involved talk about an issue. "Doctors find it easier to engage if they know that the patient and their caregiver are engaged and want to know more."
It's important for caregivers to keep in mind that, barring an immediate emergency, shared decision-making is an involved process that is likely to span across several visits. And, as Wellman points out, a senior's goals may change throughout the course of their illness, making it vital to have periodic conversations to make sure their treatment remains aligned with their preferences.
Preparing for the end
How does your mother wish her life to end? What are her views regarding resuscitation, hospice, and palliative care?
Many shared decision-making discussions that involve the elderly center around end-of-life care—whether a person wants to aggressively treat, go into palliative care, or, if the timing is appropriate, enter hospice care.
Greenberg says, "It is an honor and a burden to be involved in end-of-life decisions for someone else." She feels that the caregiver's task of carrying out an elderly loved one's final wishes while simultaneously grieving their impending loss is a difficult one to undertake.
This situation might be made easier if a caregiver and their elderly loved one have an honest and serious discussion with one another as well as with the senior's primary care provider before a serious medical issue crops up.
Both Wellman and Greenberg emphasize the need for advance care directives, such as a designated power of attorney, and do-not-resuscitate orders. Greenberg points out that there is often a difference between what a person thinks a senior's preferences are and what they actually turn out to be. In these instances, advance directives can be vitally important.
Though end-of-life discussions can be difficult, Greenberg feels it's never too early to start planning for the future, particularly if your loved one is in the beginning stages of dementia. She says, "It's much easier to be the person making the decisions when you know what those decisions are. Allowing them [a senior] to express their wishes ahead of time helps empower them into their dementia."