When you or a loved one is entering hospice in Fremont, California, you have much to plan for and tend to. It is a difficult time, fraught with emotion. You don’t want to have to think about logistics and paperwork, but unfortunately, it is a necessary part of the process. If your family tends to plan ahead, you may already have advance directives. However, if you or your loved one is entering hospice and does not have an advance directive, the team at Suncrest Home Health and Hospice of Fremont urges you to make this task a priority.
In 1990, Congress passed the Patient Self-Determination Act, which requires hospices and some other health care facilities to determine whether patients in their care have an advance directive. Thus, finding out whether our patients have an advance directive is part of the admissions process at Suncrest, as it should be at all hospice programs.
What Is an Advance Directive?
An advance directive — also known as a living will — is a legal document that outlines your wishes for your health care. It includes what decisions you want made on your behalf regarding your medical care, should you become incapacitated.
Oftentimes people only begin to think about advance directives when they are diagnosed with a terminal illness such as cancer, but the truth is that all adults should have them. You could be involved in an accident or be stricken by a sudden illness such as a heart attack or stroke. Many COVID patients were unexpectedly incapacitated for months. Without an advance directive, your family members will have to guess what care you would and would not want.
If you have no family members to decide on your behalf, doctors and other health care workers are left to make the decisions. While we expect health professionals to make good decisions about our medical care, you must remember they do not know anything about your personal beliefs and wishes. Often, they are strangers. So it is best to make your wishes known in a legal document.
What Treatment Does an Advance Directive Cover?
Among treatments often covered in an advance directive are the use of CPR, a ventilator, or a feeding tube. Ventilators have been used extensively on COVID patients throughout the pandemic. Intubating a patient is serious and is only done in critical situations. Patients are sedated but not unconscious when they are on a ventilator, and they are often given pain medication as well. Additionally, because the tube is in the patient’s throat, they cannot talk, eat or drink while they are on the vent, so they must be fed via a feeding tube.
Feeding tubes, used to deposit nutrients into the stomach, are often inserted either through the nose or mouth. But they are not only used on patients on a vent; they are used on many patients who can no longer swallow. This may be due to paralysis from stroke, Parkinson’s, or another disease. Some patients can no longer eat due to pain, weakness, unconsciousness, or another condition.
Some feeding tubes are surgically placed directly into the stomach or small intestine. People can live for years on a feeding tube, and complex issues sometimes arise regarding their quality of life. Once a feeding tube is placed, removing it can result in a patient’s death. And while these measures can extend life for a period of time, many people believe that the suffering that accompanies these treatments is not worth the extra days, weeks or months of life. Without an advance directive, a family member or health care professional could decide to place a feeding tube in you when you can no longer eat on your own.
While the philosophy of hospice care precludes using lifesaving measures, patients can sometimes be accepted into hospice care while on a vent or with a feeding tube. Generally, the patient would already have undergone these procedures before entering hospice, rather than after. The intention of hospice is to allow patients to die on their own terms, keeping them comfortable in their last days, weeks, or months. When patients decide to enter hospice, they give up lifesaving medications and procedures such as chemotherapy and dialysis.
Hospice is end-of-life care, intended only for patients who are expected to live six months or less. If a patient reaches the six-month mark but is expected not to live another six months, they may remain in hospice.
Advance Directives and Comfort Care
While advance directives cover serious procedures such as the ones we mentioned above, they also may include a patient’s wishes regarding comfort care.
Many people erroneously believe that NO meds are given in hospice, but this is not true. Pain relief is a major component of hospice care. It is our No. 1 priority to keep patients comfortable. We often provide pain relief in the form of opioids such as morphine injections or drips. We also may give antidepressants, anti-anxiety meds, sleeping pills, anti-nausea medication, meds for diarrhea or constipation, or any other medication that helps a patient feel more comfortable.
Patients who do not want to receive any of these medications can put this information into their advance directive.
Hospice patients may also want to address medical testing in their advance directive. For example, if there is blood in the stool, a doctor may order a colonoscopy. However, if the patient does want any medical testing done, they can make their wishes known in the advance directive.
As part of hospice care, patients are often offered mental health counseling with an LICSW or emotional support from a spiritual advisor. If a patient does not want these types of visits, they can include this information in their advance directive.
Do Not Resuscitate Orders
A do not resuscitate (DNR) order is frequently part of an advance directive. However, a patient can have a DNR or DNI (do not intubate) in the absence of an advance directive. Some patients wear a bracelet with their DNR or DNI status on it so there are no mistakes made during emergencies.
Because of the hospice philosophy, many people assume they need a DNR and DNI to enter hospice. But this is not necessary when you enter a Medicare-approved hospice program such as Suncrest Home Health and Hospice of Fremont. Some hospice patients, in fact, do wish to be resuscitated.
Following DNRs and Advance Directives
DNRs and advance directives are legally binding documents. This means that neither family members nor health care professionals are allowed to override them. This can bring a family member great distress, especially when the family member’s wishes run counter to the patient’s wishes. Nonetheless, the directive must be followed.
In practice, however, some doctors and other health care practitioners have been known to ignore an advance directive and perform procedures, testing, medication, or other medical procedures against the patient’s wishes. That is why is it important to properly vet the hospice program you plan to enter or put your loved one in. You want to be sure they have a reputation for honoring advance directives.
Sometimes family members divide into warring factions over the patient’s care in the absence of an advance directive. This happens less often in hospice because we do not administer lifesaving treatment. Nonetheless, having an advance directive in hand when your loved one enters hospice makes patient care much clearer and easier.
Health Care Proxy
Some advance directives include the naming of a health care proxy or someone you wish to make medical decisions for you if you are incapacitated. A health care proxy is also sometimes called a durable power of attorney. Naming someone to fill this role is useful because as specific as these legal documents can be, it is possible for a situation to arise that is not covered in the advance directive. At this time, hospice workers would usually consult the family regarding what should be done.
When a health care proxy has been named, it simplifies the situation dramatically. When no health care proxy has been named, the family may disagree on how to move forward with care. This can leave the patient in limbo while the family argues.
Considerations When Drafting an Advance Directive
Especially if you or your loved one is ill, it is best to create an advance directive as soon as possible. Not only will you have greater assurance that your wishes for your care will be followed, but you will also not have to worry that an estranged spouse, parent, child, sibling or another family member will materialize after hearing about your illness and attempt to influence your care.
California residents can download an advance directive and fill it out on their own. Your signature and the signature of two witnesses are required for your advance directive to be considered legal.
When you are deciding how to fill out your advance directive and what to include, think about quality and length of life. You may want to consider the discomfort that may result from some treatments and how long you realistically wish to prolong your life. Remember, you can make changes to your advance directive any time, but a new copy must be printed and signed.
For more information on advance directives for patients in hospice care, contact Suncrest Health Home and Hospice of Fremont, California.
