In today’s confusing and complex health care environment, it is important for every one of us to make our goals and wishes for our care expressed and understood. Where appropriate, this should be done in a manner that ensures those wishes will be respected. This applies to people of all ages and all states of health. None of us knows when we might become incapacitated due to an accident or sudden illness.
Why do I need a Health Care Proxy?
New York State provides the Health Care Proxy, a document that allows you to appoint a Proxy decision-maker should you loose decision-making capacity. Proxy forms are available at most physician offices, and on-line. The form allows you to designate another adult as your Proxy, as well as to name an Alternate. A critical factor in designating your Proxy is his or her understanding of what in fact you would want. Be sure to discuss your underlying values and health care wishes and preferences. The Holiday Season is a great time for these conversations among family and close friends. Legal and medical advice is helpful in completing the form, but not required. Carefully choose your proxy, complete the form, have it witnessed, and make sure your health care providers, including the Hospital, have it in their records. Most States recognize and honor the New York document. Since the status of and access to your Proxy may change due to moving, sickness, disability, new phone service, or death, it is advisable to update your Health Care Proxy every year.
When Serious Illness Advances, Do My Preferences Matter?
If you have a very advanced serious illness, perhaps with only a year or two to live, New York State provides an actual medical order called the MOLST – Medical Order for Life-Sustaining Treatment. This form allows your physician to order care that is aligned with your wishes should your heart stop. The order covers resuscitation wishes for when you have stopped breathing, as well as other care guidelines and instructions. Both you and your physician sign the MOLST. Signing a MOLST is not a snap activity. It is the culmination of thoughtful conversations about What Matters Most to you as your illness becomes terminal, and what your Goals of Care and Treatment Preferences are. It will most certainly guide your end-of-life care when that time comes. While the Health Care Proxy is an advance directive, the MOLST is an actual medical order. MOLST’s are available in most medical offices.
When Should I Receive “Palliative Care?”
When facing serious illness, it is also important to remember palliative care and Hospice. Palliative care is a type of medical care while Hospice is a formalized healthcare program fully covered by most insurances. Palliative care is patient-centered care that focuses on quality of life and care of the whole person: physical, social, emotional, and spiritual. The World Health Organization advises that palliative care should begin at the point of diagnosis of a serious illness, and be incorporated with all other care. That means that palliative care becomes an extra layer of care and support, even while you are undergoing cure-oriented or disease-modifying treatments. So don’t think that palliative care means Hospice – it doesn’t.
The application of palliative care before Hospice is one of the greatest needs today as progressive chronic illnesses are becoming epidemic and home care supports for seriously ill persons are increasingly inadequate. Palliative care has trained and certified specialists right here in Saratoga County, and it is also delivered by any physician in what is called “primary” or “generalist” palliative care. Congress last month passed legislation enabling more training in palliative care for medical students across the county.
When Should I Choose Hospice?
Hospice is a program of care at the end-of-life, appropriate when cure-oriented and disease-modifying treatments are no longer effective. It is available when your life expectancy is 6 months or less if the disease runs its normal course. So up-front discussions and planning with your doctor is critical. Actually, records show that many patients elect Hospice very close to the actual day of death. Hospice family members frequently say they wish they had brought Hospice in sooner. Dying is a normal part of living (none of us will get out of here alive!), and Hospice neither hastens nor postpones the dying process.
Surveys show that the vast majority of Americans want to be cared for at home, and when the time comes, to die at home. But the majority of Americans still do not do so. Many find themselves in circumstances they swore they would avoid. So take the steps today to ensure that your wishes are known and respected: Have a current Health Care Proxy document on file with all your providers; speak with your doctor about a MOLST if your illness is very advanced; add Palliative Care to your treatment plan for a serious illness; and consider Hospice with your doctor as your life expectancy becomes short term.
Phil Di Sorbo is a hospice and palliative care consultant on 233 Lake Avenue in Saratoga Springs. He served as Executive Director of Community Hospice for 26 years, including the founding of Hospice of Saratoga in 1987. He worked in hospice and palliative care capacities statewide, nationally, and in Africa. He is currently active in expanding palliative care into mainstream healthcare earlier than end-of-life, working with area health systems. He offers a navigation counseling service for seriously ill persons and their families, and can be reached at 518-755-1806 and This email address is being protected from spambots. You need JavaScript enabled to view it..
