The Facts About Advance Directives
In our senior communities we field many questions related to future care planning from residents and their families. People want to take an active role in the process. In a recent survey 80% of people said that if they were seriously ill, they would want to talk to their doctor about advance care planning, yet only 7% reported having had this conversation with their doctor. (Survey of Californians by the California Healthcare Foundation, 2012)
Making decisions now and documenting those wishes through "Advance Directives", as well as designating a Healthcare Proxy who can make decisions when you are unable to do so, gives seniors and their families the confidence that their wishes concerning end of life medical care will be honored.
Because the strong inclination of many people is to die at home surrounded by those they love, not hooked up to machines that prolong death and don't offer quality of life, at Senior Living Residences we offer hospice care in all of our communities. Hospice care, provided by healthcare professionals from local home health care agencies, offers expert medical care, pain management, and emotional and spiritual support expressly tailored to the patient's needs and wishes. At the center of hospice and palliative care is the belief that each of us has the right to die pain-free and with dignity, and that our families will receive the necessary support to allow us to do so. According to the Assisted Living Federation of America, around one-third of assisted living residents nationally receive end-of-life hospice care at the community they have made their home.
Here is some basic information and related resources on Advance Directives, assigning a Healthcare Proxy and Hospice Care. (Please note that the information concerning Advance Directives pertains to the state of Massachusetts; forms and laws differ from state to state.)
What are Advance Directives?
“Advance Directives” are legal documents which let doctors and other health care providers know your wishes concerning medical treatment in the event that you were too ill or hurt to express your wishes. They allow you to spell out your decisions about end-of-life care ahead of time to avoid confusion later on. It’s important to keep in mind that when patients choose not to receive or to stop treatment, medical care to manage pain and other physical symptoms (palliative care) continues.
Should I assign a Health Care Proxy?
The short answer is Yes. The Health Care Proxy (also called a Medical Power of Attorney, “appointment of health care agent,” or Durable Power of Attorney for Health Care) allows you to appoint someone to make health care decisions for you if you are incapable of doing so yourself. Most people select someone (family member or friend) who is knowledgeable about their wishes and religious beliefs, and in whom they have trust and confidence. The scope of a Health Care Proxy is not limited to choices at the end of life but also includes decisions in other medical situations. A Health Care Proxy goes into effect when a determination is made by your attending physician that you lack the capacity to make or to communicate health care decisions and your “Agent” consents to start making those decisions. If your doctor determines that you have regained the capacity to make or to communicate your own decisions, then your Agent’s authority will end and your consent will be required for treatment. A Health Care Proxy only affects medical care. It is not a “Power of Attorney” which deals only with personal and financial matters.
Learn more about the difference between a Health Care Proxy and Living Wills
Do I need a Living Will?
A Living Will indicates which treatments you want if you are dying or permanently unconscious. You can accept or refuse medical care. You can include instructions on the use of life-sustaining equipment (such as dialysis and breathing machines), if you want to be resuscitated if your breathing or heartbeat stops (referred to as DNRs "Do not resuscitate" orders) or if you want artificial hydration and nutrition (tube feeding). Unless you write in other instructions, it tells your doctor that you do NOT want life-sustaining treatments.
A Living Will deals only with medical issues. It is completely different and separate from your will or living trust - these are financial documents. Some people who do not appoint a Health Care Proxy create a Living Will. Other people choose to have both a Health Care Proxy and a Living Will. In the majority of states, a Living Will is a legally enforceable document and can insure that a doctor who abides by a patient's wishes will not incur any liability. Even in states without Living Will laws this document is useful to a judge trying to decide what an unconscious patient would want.
According to the Massachusetts Medical Society (MMS), Massachusetts is one of only three states that recognizes Health Care Proxies but does not legally recognize Living Wills. But the MMS encourages the use of Living Wills as "still potentially useful because they guide Agents and physicians about the types of choices a person would make." The "Personal Wishes Statement" is a document available to Massachusetts residents that takes the place of a formal Living Will.
Why would I want a DNR?
A Do Not Resuscitate order (DNR) covers only two types of situations. It states that if you suffer cardiac arrest (your heart stops beating) or respiratory arrest (you stop breathing), your health care providers are not to try to revive you by any means, such as with cardiopulmonary resuscitation (CPR). A DNR order is a document prepared by your doctor at your direction and placed in your medical records. You can have a DNR in addition to a Living Will and/or a Health Care Proxy.
What is the "MOLST" form?
MOLST "Massachusetts Medical Orders for Life-Sustaining Equipment" is a medical order form (similar to a prescription) that relays instructions between health professionals about a patient's care. MOLST is based on individuals' right to accept or refuse medical treatment, including treatment that might extend life. MOLST is not for everyone. In Massachusetts, patients of any age with a serious advanced illness may discuss filling out a MOLST form with their doctor. The process requires discussions between the signing clinician (physician, nurse practitioner or physician assistant), the patient, and family members/trusted advisors about the patient's current medical condition, goals for care and the risks and benefits of possible treatments.
After these discussions, the MOLST form may be filled out and signed by the clinician and patient to communicate orders about the use of life-sustaining treatments for the patient, based on the patient's own decisions. The signed MOLST form stays with the patient and is to be honored by health professionals in any clinical care situation.
Is the MOLST form an Advance Directive?
The MOLST form is not an Advance Directive because it is a medical document that contains actionable medical orders that are effective immediately based on a patient's current medical condition. Advance Directives, including Health Care Proxies and Living Wills, are legal documents that are effective only after the patient has lost capacity. In other words, a health care agent can make decisions for a person only after he or she has been determined to lack capacity; a Living Will is relevant only after the patient can no longer be consulted. A MOLST form, on the other hand, is a medical document signed by both the clinician and the patient, and is effective as soon as it is signed, regardless of a patient’s capacity to make decisions.
How do Assisted Living residents access Hospice Care?
Many people think that hospice care is only for patients who are in a “hospice house” or their own house. This is not true. Hospice care is also provided in Assisted Living communities.
While it is true that Assisted Living residents who are terminally ill often require intensive medical care and are better served in a hospital or nursing home, quite often family, physicians and the Assisted Living caregivers feel it is best if the resident is allowed to remain in the community while receiving hospice care. This is theirhome – the place they know and are comfortable, and where they have developed close friendships with other residents and with staff they know and trust. Receiving hospice care at home surrounded by the people who love them brings comfort and dignity to the person who is dying and emotional support for their family.
Hospice care is typically provided by an outside agency, not the assisted living community. Both organizations work closely together to provide the best possible care for the resident. Good communication between the family, the assisted living staff, hospice staff and paid caregivers (if they are involved) can make all the difference in the hospice experience.
Hospice care, as well as certain medications and medical equipment, is covered under Medicare, Medicaid, and most private insurance plans.
Hospice is becoming a more widely understood and desired concept of care at the end of life. According to the National Hospice and Palliative Care Organization:
A Gallup poll reveals that close to nine in ten adults (88%) would prefer to die in their homes, free of pain, surrounded by family and loved ones. Hospice works to make this happen.
National Hospice and Palliative Care Organization research shows that 94% of families who had a loved one cared for by hospice rated the care as very good to excellent.
The U.S. Department of Health and Human Services has indicated that expanding the reach of hospice care holds enormous potential benefits for those nearing the end of life, whether they are in assisted living communities, nursing homes, their own homes, or in hospitals.
An excellent resource for more information about hospice is: www.nhpco.org
If your loved one lives in an Assisted Living community and you are considering hospice care, speak with the Resident Care Director at the community who can provide recommendations on local agencies offering hospice and palliative (pain management) care services.
Additional Information & Free Forms
- www.healthcareproxy.org (An overview & forms to designate a Healthcare Proxy, Mass. Medical Society)
- The difference between Healthcare Proxies and Living Wills, an overview from the Mass. Medical Society
- Personal Wishes Statement (in place of a "Living Will"). As noted above, Massachusetts does not legally recognize Living Wills but this form from the official Massgov.com website documents personal wishes "to improve care at the end of life"
- molst-ma.org (This website offers detailed information on Massachusetts Medical Orders for Life-Sustaining Treatment "MOLST")
- DNR forms from the official Massachusetts (Massgov.com) website
- An overview of Advance Directives from the National Cancer Institute web site
- Understanding Advance Directives, a downloadable brochure on the topic issued by the National Hospice and Palliative Care Organization
- Blog post on AgeRight.org highlighting why Americans are not actively planning for end of life medical care