Marriage and Health Care Rights

With marriage currently in the headlines in New York, and as a follow-up on our previous caregivers post, it's a good time to take a look at spouses and health care. Legally, there are differences between marriage, civil unions, health care proxies, next-of-kin, power of attorney, etc. There are differences between state and federal laws, and laws vary from state to state. Since we're New Yorkers, and most of our patients are too, we'll focus on New York in-state rights for married couples.

- You can make emergency medical decisions for your spouse if they are unable to make their own decisions. Talk to your husband or wife about what they would want if they had an accident, their breathing suddenly got worse, or they're in the hospital and the doctor recommends they be intubated. Knowing how your spouse feels will help you make a decision if necessary.

 - You can visit your spouse and your non-biological children in the hospital or nursing home. If your husband or wife, step-children, adopted children etc end up in the hospital, you will be able to visit them during time designated for family members.

- You have access to your spouse's employer-sponsored health insurance. Married couples can take out insurance from the husband's employer, the wife's employer, or both. Talk to your human resources department about what are often called "special life events" which include adding a new spouse or a new baby to your health insurance.

- You have the right to live with your spouse in a nursing home. There are well-reported cases of elderly unmarried couples being separated, even when they have power of attorney for each other's health care needs and are named in each others' wills. Married couples should not face this problem.

- You have the right to make funeral arrangements for your spouse. If you lose your husband or wife you are legally authorised to make funerary and final resting place decisions for them.


It should be noted that for gay couples married under the recently passed New York State legislation, these rights may not extend beyond state borders. If, for example, a spouse is hospitalized while on an out-of-state vacation, their husband/wife's right to make health care decisions may not be recognized. Since marriage recognition is a current issue, the list of states and countries where rights are granted is changing. Also note that federal statutes, such as the Family Medical Leave Act, does not afford coverage to gay couples even in states where gay marriage is recognized, because gay marriage is not recognized at the federal level.

Caregivers & Loved Ones

For many people living with lung disease, things aren't as easy as they used to be. It's not just dealing with medications and treatments, but everyday activities can leave you short of breath and exhausted. Often times, friends and family step in to help out. These people, who provide unpaid assistance to a person with chronic or disabling illness, are called caregivers.

Thanks to an aging population and the structure of the American health care system, the need for caregivers is greater than ever and rising quickly. So who fills the caregiver role, and what challenges do they face? The average caregiver is 49 years old, related to the patient (generally a spouse or child), and more likely to be female (although men are moving into caregiver roles more asnd more). It is common to find a family member providing care for more than five years, and most spend between 20 and 40 hours a week doing so. A majority will spend their own money to look after a loved one, with approximately 10% of the caregiver's income going to the needs of the patient.

More than 80% of people taking care of a loved one have no education on how to do so- and report feeling unprepared for the tasks they find themselves asked to perform. Besides access to information, caregivers most report needing emotional and physical stress management, support services, and time to themselves.

The best thing that a caregiver can do for the patient is to take care of themselves. A majority of caregivers find that they do not have time to attend to their own health needs, and are generally less healthy and have higher rates of depression that in the previous year. In fact, rates of depression among caregivers can be higher than among care recipients. As the health of a caregiver improves, they may find that the person they are taking care of feels better as well.

So, Caregivers: the best way to take care of a loved one is to take care of yourself first. Make time for your own needs so that you and your loved one can be happier and healthier.

Read more:
Caregivers Article from American Family Physician

Participating in a Research Study

As a follow-up to our last post, I thought I'd address the subject of clinical trials. If you're thinking about participating, or want to know more, read on. (Warning: this post gets kind of long!)

Participating in a clinical trial raises a lot of questions for many people. The main question often asked is: will this help me? The truth is that while the data gathered is very important to people studying the disease and is likely to help people with this disease in the future, the research may or may not help you personally. Research is not the same as treatment or proven diagnostic tests. Weighing the pros and cons of participating in a study often depends on the study itself. Your doctor can explain to you all the details of the particular study, and the following list of questions can be helpful:

·  What does the study involve? (Research can mean a collection of DNA, filling out a questionnaire, taking a new medication, performing diagnostic tests, etc. It can often be two or more things combined, such as taking test before and after a new medication.)

· How long does it last? (A one-time blood test may take only a few minutes, while a medication or device trial can last several years. Many trials involve a follow-up period, where the researchers will check in with you every so often.)

· What are the alternatives? (Many hospitals participate in research so that they can give their patients the most options available. Make sure you know what your options are. Even if you have tried every alternative out there, or there are no alternatives available, you have the option not to participate.)

· Are there risks? (Knowing the risks can help you decide between research and alternatives you may be considering)

· Can I change my mind? (Ask your doctor if it will be safe to leave the study if you decide that it is not the right thing for you)

· What are the costs? (Ask who is paying the bills, or if you are liable for any charges. Some studies may charge for the tests they run, sometimes you will have a co-pay, and some studies will compensate you for your time or expenses. You should also find out who will pay the bills should any injury or ill-effects result from your participation in the study. While financial questions are important, they should not be the only reason you choose to participate.)

· Who will be in charge of my care? Can I still see my own doctor? (Coordinating your care is important, especially if you see more than one doctor. You also want to clear your participation in research with all the doctors involved in your care, and make sure they understand any changes being made in your current treatment.)

· What will happen to my information? (While research is subject to strict guidelines and regulations concerning privacy, you should feel comfortable in the way that your information is used and maintained.)

· Will I be able to see my information? (If you take a test as part of a study you may be interested in the results. Some studies can tell you your results right away, and others may not. If you knowing the results of the test may affect the outcome of the study, you may not be able to get your results until the study is over, if at all.)

· Can I see the results of the study? (Some studies will publish their results, others will only use the study for further research.)

· Can I continue the medication after the trial is over? (If the trial involves medication, you may or may not be able to get that medication after the study closes.)

· Who should I call if I have questions? (There are often several people involved in the research that are available for questions or concerns about your particular study, including a doctor, nurse, coordinator, and regulatory agency. Get names and phone numbers of who to call.)

· Are there any special concerns for this study? (These can be things like not taking your medication or not eating before a test, being available by phone for a weekly check-up call, arranging for a monthly blood test to be taken while on vacation, maintaining or eliminating certain foods from your diet, etc.)

Once you know all the details, you can make the decision that is right for you and your family. Remember that there are many different types of research, and all research is subject to many regulations and protocols that are designed to keep you safe and your information private. Whether the research is sponsored by a foundation, a government grant, or a pharmaceutical company, they are all subject to these regulations.

If you do decide to participate in a research trial, you will be asked to sign a consent form. These forms often list in detail exactly what the study involves, and who to contact should you have any questions, so you should always keep a copy for your records- even after the study is over. Should you decide to participate, you are helping doctors to improve the quality of care that they are able to provide, and you may be providing patients that are in your shoes in the future with better ways to be healthy.

Research and New Treatment Options

When you live with lung problems, it often seems like you have very limited options on how to make your life better. While there are no cures, there are new treatment options and research trials being worked on every day, in New York. It takes a lot of time for doctors and scientists to find out exactly why certain things happen in our bodies, and once they make that discovery, it takes time and money to find out how to affect the disease process. Even when they find a molecule that might work, they have to make sure it is safe to put in the human body. If it is safe, and without too many side effects, how will they then get it into the human body? If you put a medication in a pill, the pill goes first in the mouth, then through the digestive track, into the bloodstream, and eventually, the parts that can get absorbed, will make it to the lungs. Will that be effective? Will taking a pill have more effect on the stomach than the lungs? Each of these steps are subject to strict regulations by the FDA and other agencies, and each step takes time and money.

None of this should be discouraging. There are so many dedicated professionals working on these problems- devoting their life to making other people's lives better. At a conference for an upcoming scleroderma-pulmonary hypertension trial yesterday, one of the physicians making a presentation made this statement: We are just beginning to understand the mechanisms behind this disease. We are years away from working on a cure. We are working on this new drug because we think it will relieve people's symptoms and make their lives better.

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