Senior care decisions are notoriously complex. According to the Centers for Disease Control and Prevention (CDC), an estimated 85 percent of older adults have at least one chronic health condition, and 60 percent have at least two chronic conditions. One study found that 39 percent of adults aged 65 and older take at least five prescriptions medications within a one-month period.
Factors like multiple health issues, intricate medication regimens, age-related changes in physical and mental functioning, and limited life expectancy complicate medical decisions for older adults, their family caregivers and even their physicians. Frequent and candid discussions about immediate and long-term health care goals enable a senior and their whole care team to work together, think critically about all care options, and make informed decisions with confidence.
What Is Shared Decision Making?
Let’s start with a hypothetical scenario. Your elderly mother has severe Parkinson’s disease (PD). 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 both carry serious risks, including worsening cognitive impairment and even death. The chances of her living longer than six months are slim, even with aggressive treatment. Her quality of life was already declining rapidly due to her PD, and the physical and emotional stress of cancer treatment would only make matters worse. So, what is the best course of action?
This kind of scenario is very common among seniors and family caregivers. When it comes to difficult care decisions like this one, using something called “shared decision making” is the best approach. This process is an integral part of patient-centered care, which prioritizes a patient’s preferences and values when devising a care plan.
“Patients have different values, and, based on those values, they may have individualized goals of care that are specific to them,” explains Charles Wellman, M.D., chief medical officer for Hospice of the Western Reserve in Cleveland, Ohio.
Shared decision making is particularly important when dealing with seniors, a population that Debbie Greenberg-Strano, Ph.D., a clinical psychologist based in Binghampton, N.Y., calls, “the most heterogeneous group in our society.”
Based on this line of thinking, the primary issue in the above scenario is: What’s more important to your mother: potentially staying alive for a few more months or living out her last days as comfortably as possible?
A Caregiver’s Evolving Role in Patient-Centered Care
The nature of a family caregiver’s role in shared decision making depends on their loved one’s ability to participate in their own care and willingness to seek out support. Typically, when a caregiver is very involved in making medical decisions for a senior, it’s because the patient is physically and/or mentally incapable of doing so. In these instances, a family caregiver will need to be designated as durable medical power of attorney (POA) in order to make decisions on the senior’s behalf.
“It’s the older person’s right to make informed decisions, unless there are instances where they can’t,” Greenberg-Strano notes.
Sometimes, even when a senior is capable of making their own judgments, they will want their caregiver to be involved so that they can provide moral support and remain informed about their condition. According to Wellman, caregivers can be a key component in the process by advocating for their elderly loved ones and asking questions that may not have arisen otherwise.
Continuing with the above scenario, the next steps would be to determine whether your mother wants you to be involved in the decision making process. Is she willing to talk openly and honestly with you about the difficult issues surrounding her diagnosis? Is she competent to make decisions about her treatment? If not, do you have the legal authority to handle these decisions on her behalf?
Gathering Information About All Care Options
A well-informed patient is essential to the shared decision making process. Researching conditions, treatments and other care options prior to appointments 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-Strano, pre-appointment research can help patients and caregivers come up with specific questions and concerns to address with their doctor(s).
In recent years, the Internet has expanded access to medical information and helped patients and caregivers become better-informed. With a few keystrokes, someone can research their diagnosis and possible treatments. They may even be able to use forums and online support groups to connect with other people who have faced the same or similar medical issues and learn from their personal experiences.
However, there are drawbacks to Internet-based research. Anyone can post things online free of charge and practically free of penalty. Greenberg-Strano says that the web has a wealth of both good and bad information, but the most important thing to consider when conducting research is where the information is coming from.
If the material is posted by a reputable source, such as the Alzheimer’s Association, the CDC or other government-run websites, or a well-known medical institution, chances are that it’ll be accurate and up to date.
So in this instance, what technical information regarding your mother’s ailments and treatment do the two of you need to obtain in order to weigh the risks and benefits of surgery, chemotherapy or other treatment options?
Conversing Regularly About Care Decisions
Research has shown that some people don’t want to participate in a lengthy dialogue with their doctors about the pros and cons of prospective treatments. An older adult may wish to simply defer to the medical expertise of their physician. Many seniors have developed this kind of relationship with their health care providers—the doctor is the dominant participant and the patient just complies with the professional’s suggestions.
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-Strano 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.
It’s true that 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 face-to-face conversation with core members of a senior’s care team. However, Wellman laments that shared decision making is happening “way too infrequently” in the medical community.
Most doctors’ appointments are only about 15 to 20 minutes long and don’t leave enough time to explore 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,” he admits.
It’s important for caregivers to keep in mind that, barring an immediate emergency, shared decision making is an involved process that ideally won’t apply to just one major medical decision. And, as Wellman points out, a senior’s goals may change throughout the course of their illness. This is why it’s vital to have periodic conversations to make sure their care plan remains aligned with their goals and preferences. If the dialogue is kept open over the long term, a senior’s entire care team will get a more comprehensive understanding of what matters most to them and how they wish to handle their care.
Making End-of-Life Care Decisions
Many shared decision making discussions that involve the elderly center around end-of-life care. The scenario presented earlier is a perfect example of this—deciding whether a senior wants to aggressively treat a new or worsening condition, receive palliative care, or, if the timing is appropriate, begin hospice care.
“It is an honor and a burden to be involved in end-of-life decisions for someone else,” Greenberg-Strano admits.
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 very difficult one to undertake.
These situations are often a little easier if a caregiver and their elderly loved one are able to have honest and open discussions with one another as well as with the senior’s primary care provider before a serious medical issue crops up.
Both Wellman and Greenberg-Strano emphasize the need for advance care directives, such as a designated power of attorney for health care, a living will and do-not-resuscitate (DNR) orders. Greenberg-Strano 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. This is why advance care planning is crucial.
Although end-of-life care discussions can be uncomfortable, Greenberg-Strano feels it’s never too early to start planning for the future, particularly if your loved one is in the beginning stages of dementia.
“It’s much easier to be the person making the decisions when you know what those preferences are,” she reassures. “Allowing a senior to express their wishes ahead of time helps empower them.”
Sources: Supporting Older Patients with Chronic Conditions (https://www.nia.nih.gov/health/supporting-older-patients-chronic-conditions); Shared Decision Making (https://www.healthit.gov/sites/default/files/nlc_shared_decision_making_fact_sheet.pdf); Shared Decision Making: A Model for Clinical Practice (https://dx.doi.org/10.1007%2Fs11606-012-2077-6)