For many with heart disease it is a battle to remain living, yet know you are dying from a diseased heart. Many don’t discuss with their healthcare practitioners the choices and decisions they have when it comes to fighting to stay alive or choosing to let go. Over my career I have watched many patients suffer trying numerous medical interventions and medications only to have a horrible quality of life. In the medical community we see patients literally beg their doctors to let them pass, and yet the physician urges them to fight on with the newest surgery or medication. These are issues that heart patients should be able to discuss with their families and health care providers early on, so everyone has a clear picture of your wishes.
When it comes to end of life you have choices
- Stop treatment that prolongs your life. Instead, receive only treatment that focuses on your comfort and quality of life.
- Don’t stop treatment that prolongs your life.
Key points in making your decision
- If there is a good chance that your illness can be cured or managed, your doctor may advise you to first try available treatments. If these don’t work, then you might think about stopping treatment.
- If you stop treatment, you may still receive care that focuses on pain relief, comfort, and the quality of your life. This is called palliative care or hospice care.
- A decision to stop treatment that keeps you alive doesn’t have to be permanent. You can always change your mind if your health starts to improve.
- Even though treatment focuses on helping you live longer, it may cause side effects that can greatly affect your quality of life and your ability to spend time with your family and friends.
- If you still have personal goals that you want to pursue, you may want treatment that keeps you alive long enough to achieve them.
Reasons to have life support:
- You need life support because of an emergency that is not related to your illness.
- Life support may help you return to your normal activities.
- Your quality of life is good and you have a sudden event that requires life support..
- You could recover well from the event.
Reasons not to have life support
- You have other long-term health problems that make it less likely that you will benefit from life support.
- The risks of life support outweigh the benefits.
- Life support will not help you return to your normal activities or to a level of activity you would like to have.
- You want a calm, peaceful death, and you do not want to spend the rest of your life on a ventilator
Physician Orders for Life Sustaining Treatment
I had a patient who wanted to die in cardiac rehabilitation. He expressed this wish often. He was adamant he did not want any life-sustaining treatment, however in rehab we were bound to comply with our standard of care which meant life-sustaining treatment, CPR and defibrillation until the patient was received in the hospital emergency room where his advanced directive were on file. This is the case in most hospital or outpatient settings, even EMS has an obligation to respond unless one has a POLST form visible in their house or on their person. The only legal way for me to respect his wishes was for him to have a POLST form filled out and on file in the rehab department, and as a card he carried and a form posted in his home. What is POLST. It is an agreement made between you and your physician about what life-sustaining treatment you with to have. To read more about this visit the link: http://www.ohsu.edu/polst/
Do you have an ICD?
Heart patients who have an ICD need to consider and discuss the difficult issue of ICD deactivation as clinical status worsens and death is near. Unfortunately, “clinicians and patients rarely engage in discussions about deactivating ICDs, and most devices remain active until death” and “most patients are not even aware that deactivation of the shocking function is an option.”
Palliative care relieves the symptoms of disease, such as pain, shortness of breath, fatigue, constipation, nausea, loss of appetite and difficulty sleeping. It helps you gain the strength to carry on with daily life. It improves your ability to tolerate medical treatments. And it helps you have more control over your care by better understanding your choices for treatment options. Including decision-making and coordinating of issues such as ICD deactivation.
The point of palliative care is to relieve suffering and provide the best possible quality of life for both you and your family.
Palliative and hospice care is often left for the very end of life. By initiating palliative care earlier it reduces emergency department visits and improve symptoms, which increases time at home and quality of life.
Palliative care teams are made up of doctors, nurses, and other professional medical caregivers, often at the facility where a patient will first receive treatment. These individuals will administer or oversee most of the ongoing comfort-care patients receive. While palliative care can be administered in the home, it is most common to receive palliative care in an institution such as a hospital, extended care facility, or nursing home that is associated with a palliative care team. There are no time restrictions. Palliative care can be received by patients at any time, at any stage of illness whether it be terminal or not.
Hospice programs far outnumber palliative care programs. Generally, once enrolled through a referral from the primary care physician, a patient’s hospice care program, which is overseen by a team of hospice professionals, is administered in the home. Hospice often relies upon the family caregiver, as well as a visiting hospice nurse. While hospice can provide round-the-clock care in a nursing home, a specially equipped hospice facility, or, on occasion, in a hospital, this is not the norm. You must generally be considered to be terminal or within six months of death to be eligible for most hospice programs or to receive hospice benefits from your insurance.
Our health care system faces the challenge of allocating limiting resources to an aging population. The focus is on solutions that improve patient quality of life while minimizing unnecessary expenses. Integrating palliative care into the health care system at an earlier time helps quality of life and reduced cost associated with the disease process.