By Teresa Liccardi, M.D.
Understanding palliative care, hospice and advance directives
Every brand new day should be unwrapped like a precious gift.
Harry Harrison, radio personality
In the last week three people who have touched my life passed away.
I silently wept for each of them knowing what a difficult time they had during their illnesses.
The first was a relative who only after much suffering from longstanding complications of multiple chronic diseases chose hospice and passed with his family at his side. The other two were patients I had worked with over the past two years whose chronic illnesses slowly but progressively worsened in the last several months. They required repeated hospitalizations with tragic, end-of-life complications.
All three suffered from chronic incapacitating diseases that after many years of insidious smoldering finally took their toll on these dear people.
Chronic illnesses create debilitating physical, emotional and financial situations for patients and families. These diseases create an escalating surge of ongoing medical care entwined in myriads of forms, doctors’ visits and medications, sometimes 10 to 20 pills per day. Complex treatments like chemotherapy and dialysis may feel like unending dark tunnels leaving patients to question what and where is the quality of life?
The physical and emotional suffering can be excruciating for the patient and family involved in the patient’s care.
It is easy to feel lost, abandoned, overwhelmed, confused and frightened when losing control of one’s health, feeling like a slave to multiple treatments and pills to stay alive.
Physicians have usually been considered the first line of support for patients and families suffering with chronic disease. But it is not always feasible for a physician to comprehensively address the multitude of issues surrounding multiple chronic illnesses in modern medicine.
Patients, families and health-care providers may benefit from understanding the concepts and utilizing the services of palliative care, hospice and advanced directives.
Palliative care addresses the global quality of life of a patient from the time of diagnosis through the conclusion of the illness. It is in addition to usual medical care and medications. It does not replace standard medical care. Palliative care embraces the social, emotional and spiritual needs of the patient and family through professionally trained support networks and individuals. Insurance coverage varies depending on services but is generally covered including by Medicare and Medicaid.
In the United States, palliative care is a recognized specialty within medicine. Palliative care may take place at home, in a hospital or other facilities. Palliative care may be given in conjunction with end-of-life care, hospice, but they are not the same services though both give comfort.
Hospice includes comfort care but medical therapies are no longer utilized as the patient only has months to live. Palliative care may be initiated from the time of diagnosis and is meant to improve the quality of life during illness and treatment, not only at end of life. Palliative care affords patients suffering from illnesses such as cancer, stroke, chronic obstructive lung disease, heart failure and Alzheimer’s diseases an improved scope of care and quality of life.
Advanced directives help ensure that a patient’s wishes for care are met at a time when they may not be able to fully communicate them to family and physician.
A living will is a written directive that explains whether a patient wants cardiopulmonary resuscitation or CPR (pumping on one’s heart should their heart stop beating or mechanically breathing for someone should they stop breathing), feeding tubes, intravenous medications, tests and breathing machines. A living will is different than a last will and testament. A living will may not name someone to make decisions for the patient.
A special health-care power of attorney document allows someone else, specifically named in that document, to make health-care decisions for the patient. Health-care power of attorney is specifically for medical decision-making power should the patient become mentally incapacitated. It does not give the power to the designated proxy to make financial or legal decisions.
An order for DNR or “Do Not Resuscitate” specifically states that should a patient’s heart stop beating or should a patient stop breathing, they do not want artificial means including CPR to stay alive.
Treating chronic disease requires a team approach that addresses not only the medical disease itself, but also the patient’s needs from pain management and nutrition to emotional support and administrative needs to spiritual involvement and guidance on advanced directives.
Hopefully with the introduction of palliative care early in illness, patients will experience a better quality of life throughout their journey.
Dr. Teresa Liccardi, who is board certified in internal medicine and nephrology, maintains a clinic for hypertension and chronic kidney disease at the Parker Family Health Center in Red Bank.
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