You are probably reading this because someone close to you is dying. You may wonder how you can comfort the person, prevent suffering, and provide the best quality of life possible in their remaining time. If the person can no longer communicate, you may be asked to make difficult decisions about their care and comfort. This can be overwhelming for family members, especially if they have not had a chance to discuss the person’s wishes ahead of time — or if multiple family members are involved and do not agree.

Addressing a person’s advance care wishes

If the person has written documents as part of an advance care plan, such as a do not resuscitate order, tell the doctor in charge as soon as possible. If end-of-life care is given at home, you will need a special out-of-hospital order, signed by a doctor, to ensure that emergency medical technicians, if called to the home, will respect the person’s wishes. Hospice staff can help determine whether a medical condition is part of the normal dying process or something that needs the attention of health care personnel.

For situations that are not addressed in a person’s advance care plan, or if the person does not have such a plan, you can consider different decision-making strategies to help determine the best approach for the person.

Decision-making strategies: Substituted judgment and best interests

Two approaches might be useful when you encounter decisions that have not been addressed in a person’s advance care plan or in previous conversations with them. One is to put yourself in the place of the person who is dying and try to choose as they would. This is called substituted judgment. Some experts believe that decisions should be based on substituted judgment whenever possible. Another approach, known as best interests, is to decide what you as their representative think is best for the dying person. This is sometimes combined with substituted judgment.

These two approaches are illustrated in the stories below.

Joseph and Leilani’s story

Joseph’s 90-year-old mother, Leilani, was in a coma after having a major stroke. The doctor said damage to Leilani’s brain was widespread and she needed to be put on a breathing machine (ventilator) or she would probably die. The doctor asked Joseph if he wanted that to be done. Joseph remembered how his mother disapproved when an elderly neighbor was put on a similar machine after a stroke. He declined, and his mother died peacefully a few hours later. This is an example of the substituted judgment approach.

Ali and Wadi’s story

Ali’s father, Wadi, is 80 years old and has lung cancer and advanced Parkinson’s disease. He is in a nursing facility and doesn’t recognize Ali when he visits. Wadi’s doctor suggested that surgery to remove part of one of Wadi’s lungs might slow down the course of the cancer and give him more time. But, Ali thought, “What kind of time? What would that time do for Dad?” Ali decided that putting his dad through surgery and recovery was not in Wadi’s best interests. After talking with Wadi’s doctors, Ali believed that surgery, which could cause additional pain and discomfort, would not improve his father’s quality of life. This is an example of the best interests decision-making approach.

If you are making decisions for someone at the end of life and are trying to use one of these approaches, it may be helpful to think about the following questions:

• Have they ever talked about what they would want at the end of life?
• Have they expressed an opinion about someone else’s end-of-life treatment?
• What were their values and what gave meaning to their life? Maybe it was being close to family and making memories together. Or perhaps they loved the outdoors and enjoyed nature. Are they still able to participate in these activities?

If you are making decisions without specific guidance from the dying person, you will need as much information as possible to help guide your actions. Remember that the decisions you are faced with and the questions you may ask the person’s medical team can vary depending on if the person is at home or in a care facility or hospital. You might ask the doctor:

• What might we expect to happen in the next few hours, days, or weeks if we continue our current course of treatment?
• Will treatment provide more quality time with family and friends?
• What if we don’t want the treatment offered? What happens then?
• When should we begin hospice care? Can they receive this care at home or at the hospital?
• If we begin hospice, will the person be denied certain treatments?
• What medicines will be given to help manage pain and other symptoms? What are the possible side effects?
• What will happen if our family member stops eating or drinking? Will a feeding tube be considered? What are the benefits and risks?
• If we try using the ventilator to help with breathing and decide to stop, how will that be done?

It is a good idea to have someone with you when discussing these issues with medical staff. That person can take notes and help you remember details. Don’t be afraid to ask the doctor or nurse to repeat or rephrase what they said if you are unclear about something they told you. Keep asking questions until you have all the information you need to make decisions. If the person is at home, make sure you know how to contact a member of the health care team if you have a question or if the dying person needs something.

It can be difficult for doctors to accurately predict how much time someone has left to live. Depending on the diagnosis, certain conditions, such as dementia, can progress unpredictably. You should talk with the doctor about hospice care if they predict your loved one has six months or less to live.

Cultural considerations at the end of life

Everyone involved in a patient’s care should understand how a person’s history and cultural and religious background may influence expectations, needs, and choices at the end of life. Different cultural and ethnic groups may have various expectations about what should happen and the type of care a person receives. The doctor and other members of the health care team may have different backgrounds than you and your family. Discuss your personal and family traditions surrounding the end of life with the health care team.

A person’s cultural background may influence comfort care and pain management at the end of life, who can be present at the time of death, who makes the health care decisions, and where they want to die.

It’s crucial that the health care team knows what is important to your family surrounding the end of life. You might say:

• In my religion, we . . . (then describe your religious traditions regarding death).
• Where we come from . . . (tell what customs are important to you at the time of death).
• In our family when someone is dying, we prefer . . . (describe what you hope to happen).

Make sure you understand how the available medical options presented by the health care team fit into your family’s desires for end-of-life care. Telling the medical staff ahead of time may help avoid confusion and misunderstandings later. Knowing that these practices will be honored could comfort the dying person and help improve the quality of care provided.

Discussing a care plan

Having a care plan in place at the end of life is important in ensuring the person’s wishes are respected as much as possible. A care plan summarizes a person’s health conditions, medications, health care providers, emergency contacts, end-of-life care wishes, such as advance directives, and other decisions. A care plan may also include your loved one’s wishes after they die, such as funeral arrangements and what will be done with their body. It’s not uncommon for the entire family to want to be involved in a person’s care plan at the end of life. Maybe that is part of your family’s cultural tradition. Or, maybe the person dying did not pick a person to make health care choices before becoming unable to do so, which is also not unusual.

If one family member is named as the decision-maker, it is a good idea, as much as possible, to have family agreement about the care plan. If family members can’t agree on end-of-life care or they disagree with the doctor, your family might consider working with a mediator. A mediator is a professional trained to bring people with different opinions to a common decision. Clinicians trained in palliative care often conduct family meetings to help address disagreements around health care decisions.

Regardless, your family should try to discuss the end-of-life care they want with the health care team. In most cases, it’s helpful for the medical staff to have one person as the main point of contact.

Here are some questions you might want to ask the medical staff when making decisions about a care plan:

• What is the best place — such as a hospital, facility, or at home — to get the type of care the dying person wants?
• What decisions should be included in our care plan? What are the benefits and risks of these decisions?
• How often should we reassess the care plan?
• What is the best way for our family to work with the care staff?
• How can I ensure I get a daily update on my family member’s condition?
• Will you call me if there is a change in his or her condition?
• Where can we find help paying for this care?

There may be other questions that arise depending on your family’s situation. It’s important to stay in contact with the health care team.

To learn more, please visit https://www.nia.nih.gov/health/end-life/making-decisions-someone-end-life.

Many older adults share a common concern: “Can I trust the health information I find online?” There are thousands of medical websites. Some provide up-to-date medical news and reliable health information, and some do not. Choosing trustworthy websites is an important step in gathering reliable health information.

Where can I find reliable health information online?

The National Institutes of Health website is a good place to start for reliable health information. The Centers for Disease Control and Prevention website is another one.

As a rule, health websites sponsored by federal government agencies are accurate sources of information. You can reach all federal websites by visiting www.usa.gov. Medical and health care organizations, hospitals, and academic medical institutions may also be reliable sources of health information.

Your health care provider can also suggest ideal sources of online information. If your doctor’s office has a website, it may include a list of recommended links.

Questions to ask before trusting a website

Searching online, you will likely find websites for multiple health organizations, including many you may not recognize. The following questions can help determine which ones are trustworthy. Many of the answers can often be found in a website’s “About Us” section.

1. What is the purpose of the website, and who owns or sponsors it?

Why was the site created? Is the purpose of the site to inform or explain, or is it trying to sell a product or service? Understanding the motive of the website can help you better judge its content. The goal of any trustworthy health information website is to provide accurate, current, and useful information versus trying to make a sale.

Knowing who pays for a website may provide you with insight into the mission or goal of the site. For example, if a business pays for the site, the health information may favor that business and its products. Sometimes, the website address (called a URL) is helpful for identifying the type of agency or organization that owns the site. For example:

• .gov identifies a U.S. government agency
• .edu identifies an educational institution, such as a school, college, or university
• .org usually identifies nonprofit organizations, such as medical or research societies and advocacy groups
• .com identifies commercial websites, such as businesses and pharmaceutical companies

While many commercial websites do provide accurate, useful health information, it can be hard to distinguish this content from marketing and promotional materials in some cases. Any advertisements on a site should be clearly marked as such. Watch out for ads designed to look like neutral health information.

2. Who wrote the information? Who reviewed it?

Website pages often, but not always, identify the authors and contributors. If the author is listed, are they an expert in the field? Look for health care professionals or scientific researchers with in-depth knowledge of the topic. Does the author work for an organization and, if so, what are the goals of that organization? A contributor’s connection to the website, and any financial stake they have regarding the information on the website, should be made clear.

If the material is not authored by an expert, has the information been reviewed by a health care professional or other credentialed specialist? Dependable health information websites will share sources and citations.

Trustworthy websites will also have contact information — an email address, phone number, and/or mailing address — that you can use to reach the site’s sponsor. Look for this information at the bottom of web pages or in a separate “About Us” or “Contact Us” page.

Be cautious about testimonials, individual blogs, and posts on discussion boards. Personal stories may be helpful and comforting, but not everyone experiences health problems the same way. Also, there is a big difference between information written by a single person interested in a topic and a website developed by professionals using researched and peer-reviewed scientific evidence.

No online information, even if it is accurate and trustworthy, should replace seeing a health care professional who can thoroughly evaluate your unique situation and provide specific advice.

3. When was the information written and updated?

Look for websites that stay current with their health information. You don’t want to make decisions about your care based on out-of-date content. Often, the date the information was created and reviewed or updated will appear at the bottom of the page. Pages on the same site may be updated at different times, and some may be updated more often than others. Older information isn’t useless, but using the most current, evidence-based information is ideal.

4. Is your privacy protected? Does the website clearly state a privacy policy?

Read the website’s privacy policy. It is usually at the bottom of the page or on a separate page titled “Privacy Policy” or “Our Policies.” If a website says it uses “cookies,” your information may not be private. Cookies are small text files that enable a website to collect and remember information about your visit. While cookies may enhance your web experience, they can also compromise your online privacy, so it is important to read about the information the website collects and how the organization will use it. Many websites will ask you ahead of time if you want to accept cookies, but others may not. If you are concerned about the potential use of information gathered by cookies, you can choose to disable the use of cookies through your internet browser settings.

5. How can I protect my health information?

If you are asked to share personal information, be sure to find out how the information will be used. Secure websites that collect personal information responsibly have an “s” after “http” in the start of their website addresses (https://) and often require that you create a username and password.

Be careful about sharing your Social Security number. Find out why your number is needed, how it will be used, and what will happen if you do not share this information. Only enter your Social Security number on secure websites. You might consider calling your doctor’s office or health insurance company to give this information over the phone rather than providing it online.

Taking these precautions may help protect your information:

• Beware of health fraud scams and pay attention when browsing the internet. Do not open unexpected links. Hover your mouse over a link to confirm that clicking it will take you to a reputable website.
• Always use a strong password. Include a variation of numbers, letters, and symbols. Some websites may allow you to use a phrase as well. Create a unique password for each website and change it frequently.
• Use two-factor authentication when you can. This security feature requires the use of two different types of personal information to log into your mobile devices or accounts.
• Don’t enter sensitive information over public Wi-Fi. Learn about how to safely use public Wi-Fi networks.
• Be careful about the information you share through social media sites. For example, don’t share personal information, such as where you live or your contact information, on a public channel.

6. Does the website offer quick and easy solutions to your health problems? Does it promise miracle cures?

• Be cautious about websites claiming any single remedy will cure many different illnesses. Also be wary of sites suggesting simple or unproven treatments for a disease. Question dramatic writing or promises of cures that seem too good to be true and look for other websites with the same information. Even if a website links to a trustworthy source, it doesn’t mean that the site has the other organization’s endorsement or support.

Health and medical apps

Mobile medical applications (“apps”) are a type of software you can install and run on your smartphone. Medical apps can support your health in many ways. For example, they can help track your eating habits or physical activity, access test results from a lab, or monitor a health condition. They can also provide helpful reminders to exercise or take medications. But anyone can develop a health app — for any reason — and apps may include inaccurate or misleading information. Before you download or use an app, make sure you know who produced it.

When you download an app, it may ask for your location, your email, or other personal information. Apps may also collect data about you as you use them. Ensure the information collected is relevant to the app, you know how the information will be used, and you feel comfortable sharing this information. Responsible app developers will make this information readily available before you download it.

Social media, health news, and health books

Social media websites and apps are online communities through which people can connect with friends, family, and strangers. Social media is one way people share health information and news stories with each other. Some of this information may be true, but too often some of it is not. Recognize that just because a post is from a friend or colleague, it does not necessarily mean that the information is accurate, complete, or applicable to your health. Check the source of the information, and make sure the original author is credible. Fact-checking websites can also help you determine if a story is reliable.

Evaluating health information in books is similar to finding reliable information on websites or on social media. Make sure to check who wrote the book, how current the information is, and where the content came from. When in doubt, ask your health care provider about what you read.

Trust yourself and talk with your doctor

Use your good judgment when gathering health information online. There are websites on nearly every health topic, and many have no rules for overseeing the quality of the information provided. Use the information you find online as one tool to become more informed. Don’t count on any one website and check your sources. Discuss what you find with your doctor before making any changes to your health care.

To learn more, please visit https://www.nia.nih.gov/health/healthy-aging/how-find-reliable-health-information-online.

A heart attack happens when the flow of blood in one or more of the coronary arteries (major blood vessels that supply blood to the heart), suddenly becomes blocked. When this happens, part of your heart can’t get enough oxygen.

A heart attack is usually caused by coronary artery disease, which happens when a sticky, waxy substance called plaque builds up inside the arteries, causing them to narrow. The plaque can break open, causing blood clots that, if they grow large enough, will block blood flow to the heart. If blood flow isn’t restored quickly, the heart muscle begins to die.

To restore blood flow, doctors may use a medicine to dissolve the blockage. Or they may place a thin flexible tube called a catheter into an artery in the top of your leg or arm to physically open the blockage. If the clot or plaque blocking blood flow is particularly long or has certain qualities, the cardiologist may use a catheter with a stent, which is a cylinder made of thin metal mesh that helps hold the artery open.

Heart attacks are very common. They can occur in both men and women. Each year, more than 800,000 people in the United States have a heart attack.

A heart attack is a life-threatening medical emergency that needs immediate attention. Knowing the warning signs of a heart attack may help save a life. The signs can include:

• Crushing chest pain or pressure in the center or left side of the chest
• Pain, numbness, and/or tingling in the shoulders, arms, neck, jaw, or back
• Shortness of breath when active, at rest, or while lying flat
• Fainting, lightheadedness, or sudden dizziness
• Rapid or irregular heartbeat
• Cold sweats
• Nausea, vomiting, or stomach upset
• Tiredness or fatigue
• Weakness
• Anxiety

The symptoms of a heart attack can be different in men and women. Women are more likely than men to experience shortness of breath; tiredness; weakness; upset stomach; anxiety; and pain in the shoulder, back, or arm. Women may also face more health problems after a heart attack, so it’s very important if you’re experiencing any symptoms or think you’re having a heart attack to seek medical assistance as soon as possible.

Although these problems can be signs of a heart attack, they can also be associated with other health conditions. Tell your doctor about any health concerns you have.

If you or someone you know might be having a heart attack, call 911 right away. Also call 911 if you are taking prescription drugs for angina (chest pain) and the pain doesn’t go away after you take the medication. You need to take an ambulance to the hospital as soon as possible. Do not try to drive yourself, and do not have someone else drive you unless there is no ambulance service where you live. The sooner you get to a hospital, the more emergency medical professionals can do to stop any heart damage and prevent deadly heart rhythm problems, heart failure, and death. If blood flow in the blocked artery can be restored quickly, it may prevent permanent damage to the heart.

The good news is that excellent treatments are available for heart attacks. These treatments — which work best when given right after symptoms begin — can save lives and help prevent disability after a heart attack.

For more information

National Heart, Lung, and Blood Institute
301-592-8573
nhlbiinfo@nhlbi.nih.gov
www.nhlbi.nih.gov

American Heart Association
800-242-8721 
inquiries@heart.org
www.heart.org

Parkinson’s disease is a brain disorder that causes unintended or uncontrollable movements, such as shaking, stiffness, and difficulty with balance and coordination.

Symptoms usually begin gradually and worsen over time. As the disease progresses, people may have difficulty walking and talking. They may also have mental and behavioral changes, sleep problems, depression, memory difficulties, and fatigue.

While virtually anyone could be at risk for developing Parkinson’s, some research studies suggest this disease affects more men than women. It’s unclear why, but studies are underway to understand factors that may increase a person’s risk. One clear risk is age: Although most people with Parkinson’s first develop the disease after age 60, about 5% to 10% experience onset before the age of 50. Early-onset forms of Parkinson’s are often, but not always, inherited, and some forms have been linked to specific alterations in genes.

What causes Parkinson’s disease?

The most prominent signs and symptoms of Parkinson’s disease occur when nerve cells in the basal ganglia, an area of the brain that controls movement, become impaired and/or die. Normally, these nerve cells, or neurons, produce an important brain chemical known as dopamine. When the neurons die or become impaired, they produce less dopamine, which causes the movement problems associated with the disease. Scientists still do not know what causes the neurons to die.

People with Parkinson’s disease also lose the nerve endings that produce norepinephrine, the main chemical messenger of the sympathetic nervous system, which controls many functions of the body, such as heart rate and blood pressure. The loss of norepinephrine might help explain some of the non-movement features of Parkinson’s, such as fatigue, irregular blood pressure, decreased movement of food through the digestive tract, and sudden drop in blood pressure when a person stands up from a sitting or lying position.

Many brain cells of people with Parkinson’s disease contain Lewy bodies, unusual clumps of the protein alpha-synuclein. Scientists are trying to better understand the normal and abnormal functions of alpha-synuclein and its relationship to genetic variants that impact Parkinson’s and Lewy body dementia.

Some cases of Parkinson’s disease appear to be hereditary, and a few cases can be traced to specific genetic variants. While genetics is thought to play a role in Parkinson’s, in most cases the disease does not seem to run in families. Many researchers now believe that Parkinson’s results from a combination of genetic and environmental factors, such as exposure to toxins.

Symptoms of Parkinson’s disease

Parkinson’s has four main symptoms:

• Tremor in hands, arms, legs, jaw, or head
• Muscle stiffness, where muscle remains contracted for a long time
• Slowness of movement
• Impaired balance and coordination, sometimes leading to falls

Other symptoms may include:

• Depression and other emotional changes
• Difficulty swallowing, chewing, and speaking
• Urinary problems or constipation
• Skin problems

The symptoms of Parkinson’s and the rate of progression differ among individuals. Early symptoms of this disease are subtle and occur gradually. For example, people may feel mild tremors or have difficulty getting out of a chair. They may notice that they speak too softly, or that their handwriting is slow and looks cramped or small. Friends or family members may be the first to notice changes in someone with early Parkinson’s. They may see that the person’s face lacks expression and animation, or that the person does not move an arm or leg normally.

People with Parkinson’s disease often develop a parkinsonian gait that includes a tendency to lean forward; take small, quick steps; and reduce swinging their arms. They also may have trouble initiating or continuing movement.

Symptoms often begin on one side of the body or even in one limb on one side of the body. As the disease progresses, it eventually affects both sides. However, the symptoms may still be more severe on one side than on the other.

Many people with Parkinson’s disease note that prior to experiencing stiffness and tremor, they had sleep problems, constipation, loss of smell, and restless legs. While some of these symptoms may also occur with normal aging, talk with your doctor if these symptoms worsen or begin to interfere with daily living.

Diagnosis of Parkinson’s disease

There are currently no blood or laboratory tests to diagnose non-genetic cases of Parkinson’s. Doctors usually diagnose the disease by taking a person’s medical history and performing a neurological examination. If symptoms improve after starting to take medication, it’s another indicator that the person has Parkinson’s.

A number of disorders can cause symptoms similar to those of Parkinson’s disease. People with Parkinson’s-like symptoms that result from other causes, such as multiple system atrophy and dementia with Lewy bodies, are sometimes said to have parkinsonism. While these disorders initially may be misdiagnosed as Parkinson’s, certain medical tests, as well as response to drug treatment, may help to better evaluate the cause. Many other diseases have similar features but require different treatments, so it is important to get an accurate diagnosis as soon as possible.

Treatments for Parkinson’s disease

Although there is no cure for Parkinson’s disease, medicines, surgical treatment, and other therapies can often relieve some symptoms.

Medicines for Parkinson’s disease

Medicines can help treat the symptoms of Parkinson’s by:

• Increasing the level of dopamine in the brain
• Having an effect on other brain chemicals, such as neurotransmitters, which transfer information between brain cells
• Helping control non-movement symptoms

The main therapy for Parkinson’s is levodopa. Nerve cells use levodopa to make dopamine to replenish the brain’s dwindling supply. Usually, people take levodopa along with another medication called carbidopa. Carbidopa prevents or reduces some of the side effects of levodopa therapy — such as nausea, vomiting, low blood pressure, and restlessness — and reduces the amount of levodopa needed to improve symptoms.

People living with Parkinson’s disease should never stop taking levodopa without telling their doctor. Suddenly stopping the drug may have serious side effects, like being unable to move or having difficulty breathing.

The doctor may prescribe other medicines to treat Parkinson’s symptoms, including:

• Dopamine agonists to stimulate the production of dopamine in the brain
• Enzyme inhibitors (e.g., MAO-B inhibitors, COMT inhibitors) to increase the amount of dopamine by slowing down the enzymes that break down dopamine in the brain
• Amantadine to help reduce involuntary movements
• Anticholinergic drugs to reduce tremors and muscle rigidity

Deep brain stimulation

For people with Parkinson’s disease who do not respond well to medications, the doctor may recommend deep brain stimulation. During a surgical procedure, a doctor implants electrodes into part of the brain and connects them to a small electrical device implanted in the chest. The device and electrodes painlessly stimulate specific areas in the brain that control movement in a way that may help stop many of the movement-related symptoms of Parkinson’s, such as tremor, slowness of movement, and rigidity.

Other therapies

Other therapies that may help manage Parkinson’s symptoms include:

• Physical, occupational, and speech therapies, which may help with gait and voice disorders, tremors and rigidity, and decline in mental functions
• A healthy diet to support overall wellness
• Exercises to strengthen muscles and improve balance, flexibility, and coordination
• Massage therapy to reduce tension
• Yoga and tai chi to increase stretching and flexibility

Support for people living with Parkinson’s disease

While the progression of Parkinson’s is usually slow, eventually a person’s daily routines may be affected. Activities such as working, taking care of a home, and participating in social activities with friends may become challenging. Experiencing these changes can be difficult, but support groups can help people cope. These groups can provide information, advice, and connections to resources for those living with Parkinson’s disease, their families, and caregivers. The organizations listed below can help people find local support groups and other resources in their communities.

To learn more, please visit https://www.nia.nih.gov/health/parkinsons-disease/parkinsons-disease-causes-symptoms-and-treatments.