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Tag: Advance directives

  • HIPAA and why you need a health care proxy

    HIPAA and why you need a health care proxy

    In 1996, more than 25 years ago, Congress enacted the Health Insurance Portability and Accountability Act, which aims to safeguard people’s private health care information. Keeping people’s health care information private is important. But, HIPAA sometimes also keeps doctors and hospitals from sharing key information with you about the people you love. HIPAA provides all the more reason everyone should have a health care proxy–someone you designate, whom you trust, who can speak for you and ensure your wishes are honored, when you cannot speak for yourself.

    Without a health care proxy (sometimes called a “medical power of attorney” or an “advance directive,”) your family has only limited rights to make health care decisions on your behalf. And, at times, doctors and other care providers are not aware of these rights or misunderstand them, preventing your family from making needed decisions. Stories abound of family members not able to get information from the doctor about a loved one’s condition because of HIPAA. HIPAA does not keep this information from being shared in many cases, but doctors and hospitals often misapply it.

    For your own peace of mind, make sure you and the people you love have signed health care proxies. They are state-specific. You can download them free here. With a signed health care proxy, you know that someone you trust can speak on your behalf if you’re hospitalized and unable to speak for yourself. Without a health care proxy, that person may not be able to help you at all.

    Ideally, you should give a copy of your health care proxy to the person you have designated as your proxy as well as to your doctor. If you don’t share it with the person, make sure your health care proxy knows where to locate it in your home. It’s of no use if your proxy does not have a record of it. For more reasons why health care proxies are so important, click here.

    What does HIPAA allow? HIPAA does allow doctors and other care providers to disclose a person’s health information to family members or close friends when in their professional judgment it’s in the best interest of the patient. And HIPAA only applies to care providers, health insurers and health data collectors, not clubs or churches or other organizations. So an assisted living institution or nursing home can let people know about the condition of their loved one.

    Updated from September 23, 2015 and December 31, 2018.

    Here’s more from Just Care:

  • Roundup: Planning for life’s curve balls

    Roundup: Planning for life’s curve balls

    Life happens. Tomorrow, who knows what will be. At some point down the road, we are all likely to need assistance caring for ourselves. It’s wise to be prepared for life’s curve balls. Here’s a roundup of things to think about and some of the ways you might plan ahead.

    Paperwork

    Medical help

    Care

    End-0f-life choices, funerals and stuff:

  • VSED, an end-of-life choice

    VSED, an end-of-life choice

    When it comes to health care, there seem to be fewer and fewer things that the US health care system gets right. End-of-life matters are no exception, with hospitals generally keeping people alive, even when they have asked to die, and forcing their loved ones to suffer through their slow passing. For this reason, Kevyn Burger reports for Next Avenue that more people are taking their deaths at the end of their lives into their own hands through voluntarily stopping eating and drinking or VSED.

    One way people help ensure a peaceful death is through electing hospice care.  Medicare covers hospice care, usually at home, for people believed to have six months or less to live. Hospice care focuses on easing pain and providing social and emotional supports for patients and their families, To learn more about the hospice benefit, click here.

    At the end of their lives, some people choose to speed up their death by forgoing food and drink, an age-old process. This choice is called “voluntary stopping eating and drinking” or VSED. People typically die in 10 days.

    Three quarters of Americans favor medical assistance in dying. Ten states–California, Colorado, Hawaii, Montana, Maine, New Jersey, New Mexico, Oregon, Vermont, and Washington—and Washington DC permit it. In these places, patients with six months or less to live can ask their doctors for medicines that allow them to die in their sleep. But, in other states, where this is not an option, VSED is an option.

    You need assistance with VSED to ensure your pain and other symptoms are well managed. Medicines should be available to you. It’s best for patients who are in very poor health to understand the process and be committed to it. Even with help from a doctor, it is not considered assisted suicide. But, a family member who helps with VSED should have written authority through a health care proxy document or durable medical power of attorney that he or she is carrying out the patient’s wishes if the patient cannot speak for himself or herself.

    A new book! “Voluntarily Stopping Eating and Drinking, A Compassionate, Widely-Available Option for Hastening Death” explains the process, including practical and ethical details.  It also provides case examples.

    On day one, patients can engage with their loved ones and say good goodbye. With no food or drink, they get weaker and are less able to engage. With no liquids, their organs fail. Quite quickly, they tend not to be hungry but they are thirsty. Water will extend life, so generally mists and swabs of the patient’s mouth are the treatment.

    With VSED, it’s common for patients to become delirious and agitated right before death. They are often given tranquilizers and anti-anxiety medicines.  Then, their heart stops, and they stop breathing.

    Here’s more from Just Care:

  • Six reasons why you and your loved ones should create advance directives

    Six reasons why you and your loved ones should create advance directives

    Advance care planning is important for your peace of mind and for the people you love. You should begin care planning by creating an advance directive. An advance directive is a legal document that generally includes a living will and names a health care proxy. The living will states your wishes about your health care if you cannot speak for yourself and your health care proxy is someone you name to act on your behalf regarding your medical treatment if you are unable to speak for yourself.

    Here are six reasons why you and your loved ones should create advance directives, even if you’re in good health.

    1. An advance directive is free and easy to create. Advance directives need to be in writing, but creating one comes at no cost and is generally an easy process. Click here to learn what free resources are available and how to download a free advance directive.
    1. An advance directive helps you think about the goals you have for your health and health care. Making decisions about end-of-life care isn’t easy. Some people value prolonging of life over all else, where others prioritize relief of pain and suffering or the effects of one’s care on loved ones. Whatever you decide, planning ahead can help you consider these important issues and communicate them with your friends, family and healthcare providers in a time and place where you can think things through clearly.
    1. An advance directive helps you prepare for unexpected medical situations. Many people think that they do not need to plan for their care until they reach the later stages of life. However, end-of-life situations can happen to anyone. Creating an advance directive ensures you are prepared for any medical situation that may come your way.
    1. An advance directive comforts your family and loved ones. Caregiving is hard. It’s stressful to make an end-of-life decision for someone you love if you don’t know their wishes. And, it can cause friction within a family if people’s views are not aligned. Completing an advance directive and sharing it with the people you love helps bring your family together and provides comfort to them that they are following your wishes should they need to act on your behalf. An advance directive is a legal document that doctors and hospitals must honor. The advance directive ensures the people you love can make decisions on your behalf. 
    1. An advance directive allows your doctors and other care providers to better understand you and your desires. By creating an advance directive and sharing it with your doctors, you are telling them that you are informed and involved in decisions about your care. This can reinforce a meaningful relationship between you and your doctors that, in turn, can serve as an important source of emotional support during difficult times.
    1. An advance directive speaks for you when you cannot speak for yourself. Most importantly, an advance directive makes sure you are treated the way you wish to be treated, no matter what the circumstance. (Of course, if your treatment priorities change, you can change your advance directive.) Click here for a Jon Stewart interview of Dr. Atul Gawande about the value of  sharing your end-of-life priorities with the people you love repeatedly and over time.

    After you’ve created your advance directive, be sure to give a copy to your doctor as well as to the people you love. And, if you’re not ready to share it with the people you love, at least be sure they know where you keep it.

    To learn about Medicare coverage of hospice care, click here.

    [NB: This post was originally published on May 8, 2019.]

    Here’s more from Just Care:

  • Coronavirus: Planning ahead for a medical emergency

    Coronavirus: Planning ahead for a medical emergency

    The novel coronavirus pandemic led many more Americans to buy life insurance in 2020 than in the past. Even younger adults have a fear that they could die at any time. You might not need life insurance, but if you have not yet done so, it might be time to plan ahead for a medical emergency: designate a health care proxy, prepare or revisit your will, do some estate planning and otherwise put your affairs in order. Here’s what you might want to think about:

    • A living will and health care proxy: These “advance directives” let your loved ones know your health care wishes if you are unable to express them yourself. The living will states your wishes about your health care if you cannot speak for yourself and your health care proxy is someone you name to act on your behalf regarding your medical treatment if you are unable to speak for yourself. Completing these advance directives and sharing them with the people you love helps bring your family together and provides comfort to them that they are following your wishes should they need to act on your behalf. A signed advance directive for your state is a legal document that doctors and hospitals must honor. The advance directive also ensures that the people you love can make decisions on your behalf.  Without a health care proxy, if you became unable to care for yourself, it is possible that the state would appoint a legal guardian, unknown to you, to act on your behalf. To get a free advance directive for your state, click here.
    • A durable power of attorney: A durable power of attorney is a legal document that allows you to name someone to help with your financial affairs whenever you would like and if you become unable to handle them yourself. The person you name should be someone you trust with your finances, someone who could make decisions about your finances if need be. That person also could be your health care proxy. Completing a durable power of attorney and sharing it with the person whom you name to handle your affairs should provide comfort to the people you love. You should also share it with all financial institutions with which you have accounts.
    • Long-term care insurance: If you don’t have it, no worries. It’s likely not worth having. The cost of the policy is generally very high relative to the benefits. For most people with means, it’s better to put aside money to pay for long-term services and supports, such as home care and nursing home care.
    • Your stuff: You might want to set aside time to go through your possessions with your loved ones. Yes, it can be stressful, conjuring up all kinds of feelings and emotions; your children may not want the items you hoped they would take, even if you give these items special meaning and importance. And, it can cause conflicts among siblings if you want one child to have something another child values. But, going through your possessions with your loved ones also can be comforting. Your family can feel good that there’s a plan in place for your things and that you support it.
    • In case of emergency: Create a file with:
      • A list of your family members, friends and neighbors and their contact information
      • A list of important medical, business, financial and legal contacts, including your doctors, bankers, lawyers, as well as the names of your health and life insurance companies and their contact informaiton
      • Your will, your health care proxy, living will, durable power of attorney and other legal documents
      • Your most recent tax return
      • Your car title and deed to you house, if you own it
      • Copies of your Medicare and Social Security cards, as well as other insurance cards, including supplemental coverage and life insurance, as well as policy numbers and contact information
      • Your medical records and a list of all your medications
      • Mortgage or rent information, as well as utilities information
      • Digital account information, including passwords
      • Information with provisions you have made for your pets, your funeral and other matters of importance to you

    Here’s more from Just Care:

  • What’s a dementia directive?

    What’s a dementia directive?

    You may have heard of an advance directive, a document all adults should prepare, naming a person to speak for them if they cannot speak for themselves and setting forth their care wishes. Now, the New York Times reports that a group of experts in care for older people have developed a dementia directive. It is designed specifically to honor the care wishes of people living with dementia, a cohort of about 5.3 million older Americans.

    Unlike an advance directive, with a dementia directive, people specify their care wishes at each stage of dementia. It explains the effects of mild or early-stage dementia, as well as moderate or mid-stage dementia, and severe or end-stage dementia. And, it asks people to set forth the kind of medical interventions they would want at each stage, offering a set of options.

    Advance directives can be enormously helpful in most instances in which patients are unable to express their care wishes. But, the creators of the dementia directive say that advance directives do not address the care needs of patients with dementia. They tend to be written for people who have been deemed to be terminally ill, with six months or less to live.

    People may live for many years with dementia. So, the dementia directive offers four different types of care options for people with dementia at each stage, ranging from “full efforts to prolong my life” to “comfort-oriented care only, focused on relieving suffering.”

    The dementia directive is a new concept and time will tell whether it takes off or not. Regardless, people should speak with the people they know and trust about their care wishes down the road. You should have those conversations to help ensure you enjoy the quality of life you want to enjoy and are not forced to live a life that you would find unacceptable. Whatever your age, share your views on the kinds of medical interventions you would want and those you would not want if you could not express your wishes yourself.

    Here’s more from Just Care:

  • For your peace of mind and for the people you love, plan in advance for your care

    For your peace of mind and for the people you love, plan in advance for your care

    No matter how old you are, planning for your future care needs is one important gift you can give yourself and your family. Advance care planning helps ensure that your care wishes are honored if you are not able to speak for yourself.

    No one knows when they may suffer a serious illness or injury and find themselves unable to speak for themselves. That’s why advance care planning is extremely important for people of all ages. Medicare covers advance care planning as part of your Annual Wellness Visit with your primary care physician.

    If you should become seriously ill, advance care planning helps you understand and consider your care options—either curative care or hospice care. And you’ll also explore with your doctor whether you would prefer to die at home or in the hospital. You’ll ensure that the care you get is the care you want, even if you’re not able to reveal your wishes.

    Advance care planning should also include completing written advance directives—a health care proxy and living will. These legal documents help ensure your treatment wishes are honored. This advance care planning is separate from your doctor’s visit. Advance directives–a health care proxy and a living will–ensure your designated agent can speak on your behalf and honor your care wishes. Through a living will, you make clear your health care wishes should you not be able to express them. Through a health care proxy, you name someone you trust to speak on your behalf if you cannot speak for yourself.

    Only three out of ten Americans have advance directives. Many people don’t realize they need them.  And, even if you want one, it’s easy to put off completing the advance care plan.  So, if you don’t yet have a living will or health care proxy, here are three steps to take on your own, when you’re spending time with family. Ideally, you should have a living will and health care proxy before a hospital stay.

    1. Talk to your parents and kids about the kind of care you would want if something were to happen to you and you could not decide for yourself the care you need. Consider as well whether you would want hospice care, which Medicare covers.
    2. Pick someone whom you trust to make decisions for you if you can’t make them yourself, your “health care proxy.”
    3. Complete a written health care proxy and living will, and share them with the person you have chosen to make decisions on your behalf, your family and loved ones, as well as with your doctors. You might also consider giving your health care proxy or someone else you trust a power of attorney. You should consult an elder care lawyer if you can.

    For a free advance directive from Caring Connections, click here. Click here for advice from Dr. Atul Gawande about planning for end-of-life care.

    Here’s more from Just Care:

  • Do you need a POLST, Physician Order for Life-Sustaining Treatment?

    Do you need a POLST, Physician Order for Life-Sustaining Treatment?

    A POLST or Physician Order for Life-Sustaining Treatment is a type of advance directive written by a physician, which complements a person’s advance directive. All adults should have an advance directive documenting their end of life wishes. Adults in the last stages of life also would benefit from a POLST.

    An advance directive includes a living will–a document that details the kinds of care people would like at the end of life–and a health care proxy–a document reflecting people’s wishes regarding who should speak for them if they cannot speak for themselves.

    A POLST puts in writing a doctor’s medical orders to ensure that patients get the treatments they want and do not get the treatments they do not want in a medical crisis, when they cannot speak for themselves.

    What is the difference between an advance directive and a POLST? All adults should have an advance directive documenting their end-of-live wishes. Adults who are relatively healthy do not need a POLST. Adults who are extremely frail or ill, with less than one year to live, should consider having a POLST. The POLST is written by physicians after speaking with their patients (or their health care proxies) about their diagnosis, prognosis, treatment options and goals of care. The POLST captures the kinds of medical care individuals would want in a medical emergency. A POLST is a medical order that can direct an emergency medical team.

    What kinds of information would be included in a POLST? A POLST reflects an individual’s treatment wishes at the end of life. If individuals want all treatments possible to try to keep them alive, the POLST would document that they should get CPR and Full Treatment. Or, it might say that a patient only wants comfort measures and limited treatment. Patients always get interventions that offer them comfort, including food and fluid by mouth as tolerated. But, they may opt not to have food artificially administered.

    A POLST might indicate that patients do not want to be resuscitated if they do not have a pulse, are not breathing and are non-responsive. But, rarely is that the case. So, a POLST might also indicate whether the patient wants to be moved from home to the hospital in an emergency or would prefer to remain at home.

    Here’s more from Just Care:

  • Barbara Bush chooses comfort care at end of life

    Barbara Bush chooses comfort care at end of life

    Nearing the end of her life, Barbara Bush opted for comfort care, sometimes called “palliative” care.  She chose not to seek medical interventions to treat her congestive heart failure and chronic obstructive pulmonary disease. Rather, she opted for an improved quality of life, with minimal pain. By sharing her decision publicly, she is helping to open up conversations about the value of palliative care that many people are not yet having.

    People with Medicare at the end of life always have the choice between medical interventions that attempt to cure a condition and hospice care, which includes palliative care, if they plan ahead. Planning ahead means talking to the people you love about the kind of treatments you would want if you were unable to speak for yourself. Life happens, so these conversations are important for adults of all ages. Considering these choices while you are healthy, sharing your thoughts with the people you love and putting them in writing allows you to ensure your health wishes are honored.

    To be clear, choosing palliative care means getting treatment that keeps you as pain-free as possible. It does not mean ending all medical treatment. In Bush’s case, it could mean receiving morphine to address struggles with breathing that come with COPD and diuretics to eliminate extra lung fluid. It likely means foregoing a breathing machine.

    Bush had seen the value of palliative care directly. She had once volunteered for the Washington Home, a residence for patients with chronic illnesses. And, Bush had launched its hospice program.

    The question you should consider is whether and under what circumstances would  you prefer care to ease pain, along with social and emotional supports over aggressive medical interventions. And you should ask the people you love the same question so that their end-of-life wishes are honored. You should also consider completing an advance directive, a legal document that allows you to put your end-of-life wishes in writing in a living will and to appoint a health care proxy, a person you know and trust to honor your wishes and direct your care if you cannot speak for yourself.

    Here’s more from Just Care:

  • What’s a psychiatric advance directive?

    What’s a psychiatric advance directive?

    We all need advance directives—living wills and health care proxies that enable us to identify a trusted friend or family member who can help ensure that our care wishes are honored if we cannot speak for ourselves. As more people come to recognize the value of advance directives, experts are seeking to expand upon them. Some have begun to promote dementia directives, and now others are promoting psychiatric advance directives.

    The idea behind a psychiatric advance directive (PAD or mental health advance directive) is to best ensure that the wishes of someone living with a mental illness are honored if they are suffering from a mental disorder that prevents them from making medical decisions for themselves. Jennifer Adaeze Okwerekwu writes in StatNews that her patient with catatonia could “barely move or speak.” He did not want food or water, let alone medical treatment.

    Because Dr. Okwerekwu’s patient did not have a psychiatric advance directive–a legal document outlining the patient’s treatment preferences should he not be able to state them–the doctor could not insist he receive treatment until he was in physical danger. His mental crisis without any physical crisis prevented any medical intervention. Had the patient had a psychiatric directive, he could have set forth in advance the medications he would have wanted, along with other information to ensure his care wishes were met.

    Today, only some states allow patients to write psychiatric advance directives. New York is among them. In Virginia, psychiatric advance directives are only honored if signed by two witnesses, excluding the health care proxy. Massachusetts does not allow psychiatric advance directives but does allow a health care proxy the authority to direct the care of a patient when he or she is incapacitated. The Massachusetts law burdens psychiatric patients with having to speak with their proxies about their care wishes, when they are incapacitated, which can be challenging. To learn more about the law in your state, click here.

    Here’s more from Just Care: