What is End-of-Life Care?
Estate planning attorneys and elder law attorneys should discuss end-of-life care with each client. Having a plan in place for end-of-life care is an important part of each client’s portfolio. But what is end-of-life care?
End-of-life care is aimed at making a patient comfortable, physically and emotionally, at the end of their life. Caregivers are not usually focused on curing any illnesses, but rather carrying out the wishes of the patient when death is near. Does the patient prefer to die at home? Does the patient want life-sustaining treatment? Has the patient contemplated doctor assisted suicide? These questions and more are answered through end-of-life care discussions.
What Options are There for End-of-Life Care?
There are many options regarding end-of-life care:
Hospice care is focused on the care and comfort of the patient, not curing the patient. Hospice care is about making one comfortable at the end of their life and includes a focus on spiritual care and mental counseling.
- Hospice care can be done at a live-in facility or in one’s home.
- To be eligible for hospice care, one must have a medical diagnosis of 6 months or less to live.
- In most cases, to be eligible for hospice, a patient must decline treatments aimed at curing their illness and elect care for symptom management instead.
Palliative sedation involves being medicated to the point that one no longer has consciousness. Palliative sedation is sometimes called “terminal sedation”.
- This option is available even if one has a diagnosis of more than six months to live.
- Palliative sedation must be closely monitored by health care workers who specialize in this area.
- Palliative sedation can also offer curative care, in additional to comfort care.
Pain and Symptom Management
Pain and symptom management uses medication and other therapies to provide comfort to a terminally-ill patient. Medication can include prescriptions and natural remedies, while therapies can include acupuncture, massage therapy, and aromatherapy.
- Unlike palliative sedation, one does not have to be medicated to the point of unconsciousness.
- Pain and symptom management can be carried out in a facility setting or at home.
Voluntarily Stopping of Eating and Drinking
Voluntarily Stopping of Eating and Drinking (VSED) involves a patient choosing to not to eat or drink. This oftentimes accelerates the dying process.
- Anyone has the right to refuse food or drink.
- VSED usually includes a pain and symptom management plan.
- When a patient is in a facility, loved ones may have to closely monitor their care to ensure health workers are carrying out the VSED wishes.
Declining or Cessation of Life-supporting Treatment
Due to modern medicine, many medical treatments can prolong life. However, not every patient wants their life prolonged through these artificial means, which can include a ventilator, feeding tube, and CPR.
- Anyone can refuse any particular medical treatment.
- Some patients forego these life-sustaining treatments because their quality of life is not improved through these methods, and their suffering may be increased.
- Some patients may have religious objections to being artificially kept alive.
Medical Aid in Dying
When a patient has a prognosis of 6 months or less to live and are mentally capable of making such decision, they may decide to end their life by taking a prescription drug.
- The patient must be able to self-administer the drug.
- Some patients feel comfort by just having the prescription, whether or not they actually use it.
- Medical aid in dying is currently legal in California, Oregon, Washington, Montana, Colorado, Vermont, Hawai’i and Washington D.C.
What Documents Should a Client Have in Place?
A client’s wishes regarding their end-of-life care should be legally documented in their medical power of attorney and their living will. The medical power of attorney states who they want to oversee their medical care in the event they are unable to do so, instructions on medical evaluations and treatments, preferences regarding pain management and psychiatric care, and the preferable location of care. The living will states the client’s wishes regarding life-sustaining treatment.
Without a medical power of attorney in place, if a client were to become incapacitated, their family would have to go to court to seek a guardianship. This can be a lengthy and costly process, and it does not ensure the client’s wishes are carried out. Each estate planning and elder law attorney needs to ensure his or her client’s wishes are documented through a valid medical power of attorney.
The Ethics of End-of-Life Care
Advances in science and medicine often allows a patient to prolong his or her life. Should a patient’s life be prolonged? What methods should be used? Who should make those decisions? Ethics regarding end-of-life care are ever evolving, to keep up with the laws and sentiments of society.
Every once in a while, an end-of-life case will grab national attention, like the Terri Schiavo case of 2005. Terri was a woman in a persistent vegetative state. Her husband claimed that Terri would not want artificial life support, while her parents argued the opposite. Should Terri be removed from life support? Should her husband or her parents make that decision, absent a living will? When a case like this garners national attention, most will have an opinion on the matter. Death and dying can invoke strong emotions, especially when it involves a loved one.
Many ethical dilemmas can arise from end-of-life care, including patient autonomy. What if a loved one made decisions through a living will that a family member does not agree with? What if a spouse thinks the patient changed their mind regarding this care but failed to update their legal document? If a patient is incapacitated, should a loved one be able to alter their care plan?
Many have religious objections to certain medical care. For example, Amish believe that end-of-life care should be rationed and they usually prefer to die at home rather than in a hospital. Buddhists strongly oppose medical aid in dying. The Catholic Church also opposes medical aid in dying. Until recently, Catholics viewed pain relief as conceivably shortening one’s life and so it was discouraged by the Church. Pope Pius XII was the first Pontiff to give permission for a terminally ill patient to use pain medications, even if the patient’s life may be shortened. He stated “In such a case (use of painkillers and sedatives), death is not willed or sought, even though for reasonable motives one runs the risk of it: there is simply a desire to ease pain effectively by using the analgesics which medicine provides”. [Kevin D. O’Rourke, Medical Ethics: Sources of Catholic Teachings, 252 (4th Ed. 2011)]
What are Some Good Resources?
- National Hospice and Palliative Care Organization
- Hospice Foundation of America
- National Institute on Aging
- Compassion and Choices
- Neptune Society's "The Conversation" resource
End-of-life care information and options are coming to the forefront of society. Death is inevitable, but with advances in science we are able to think differently about dying and our options. Dying with dignity and less pain is often the goal for patients. What does that look like for each individual patient? Having the proper legal documents in place, a medical power of attorney and a living will, are crucial in making sure one’s wishes are carried out. Each adult should have these documents in place and should make their wishes known to friends and family. A good estate planning attorney and/or elder law attorney should know the options for end-of-life care and have meaningful conversations with each client about his or her options.
ElderCounsel is hosting The Next Frontier: Artificial Intelligence and the New Digital Landscape of Elder Law and the Elder Care Industry September 14-15. Jonathan Patterson, J.D., of Compassion and Choices will be a guest speaker. Compassion and Choices is the nation’s oldest, largest, and most active non-profit organization committed to improving care and expanding options for the end-of-life. Jonathan will lead a discussion on end-of-life topics and how to have this conversation with clients. Learn More...