End of Life Care: Definition and Main Concepts
Although the end of life care might sound pessimistic, it’s nothing like that. End of life care is aimed at helping patients gain peace and get rid of the pain and other symptoms they might feel during the last days of their lives.
End of life care addresses the four critical areas of a patient’s health status – physical comfort, mental and emotional needs, spiritual issues, and practical tasks. This type of care helps not only the patients but also their families and caregivers who spend most of the time with them.
End-of-life care is created for terminally ill patients that gave up their curative treatments but want to leave this world in peace and with dignity. Therefore, they will receive physical, emotional, mental, and spiritual support that will ease their pain and make them feel better emotionally.
End of life care may include hospice care, palliative care, and comfort care.
What is End of Life Care?
End of life care is a type of medical care aimed at people with a terminal condition that cannot be cured, but it has become advanced and progressive. That said, end of life care can’t cure a particular disease, but it can only reduce the symptoms associated with physical and emotional aspects.
The people that provide end of life care are entirely focused on the patient’s needs and preferences. That said, patients and their families can choose whether they want to receive care at home, in an inpatient facility, hospice center, or hospital.
End of life care can be provided as hospice care, palliative care, and comfort care. Depending on the stage of your condition and your personal needs, you can choose among these types of support:
- Hospice care: You may enroll in hospice care when you’re diagnosed with a life-threatening disease and a prognosis to live six months or less. Hospice care is usually provided at home, but if a patient wants to consider other options, he/she is free to choose. A person must give up his/her curative treatments before enrolling in the hospice.
- Palliative care: Unlike hospice care, which requires a 6-month prognosis, a patient can begin palliative care at any time. Patients can continue with their curative treatments while receiving palliative care, which is aimed at relieving their physical and emotional pain. Like hospice care, palliative care cannot cure a person’s illness.
- Comfort care: Comfort care is something between hospice and palliative care, and it’s mostly focused on the patient’s mental, emotional, and spiritual needs. Comfort care providers do their best to help the patient feel comfortable and as pleasant as they can during the most challenging hours of their lives.
When to Start with End of Life Care?
There is no exact time for a person to start with lifeend care. It will depend on the individual and the progression of their illness, which can be slower or faster. Still, you should consider it if you notice some of the following signs:
- Your loved one has been hospitalized too many times lately. Even though their condition has been stabilized, the illness keeps progressing and affecting a person’s quality of life.
- Your loved one has been admitted to the hospital several times throughout the last year with the same or worsening symptoms.
- They want to stay at home rather than in the hospital.
- They want to stop receiving curative treatments because they don’t work anymore.
You should also pay attention to some common end of life symptoms that can be managed in order to improve a patient’s quality of life. Such symptoms include:
- Loss of appetite: Patients who are dying feel the loss of appetite, which often leads to anorexia.
- Difficulty breathing: Patients may experience breathing difficulties even if their breathing and oxygen levels are normal.
- Respiratory secretions: This is also known as a “death rattle,” and it’s a sign that the death is near. These sounds are caused by fluid accumulating in the back of the throat in patients that no longer have a swallowing or cough reflex.
All these signs can be managed with medicines and adequate therapies that will mitigate their adverse effects on a person’s quality of life. Although they will have no impact on the illness itself, they will make the person feel more comfortable and relaxed.
What to Expect with Nursing Care Plan for End Of Life?
End of life care planning should start on time. Patients recommended to talk to their family members and express their opinions regarding hospice or palliative care. It’s very important that the family understands and accepts the decision their loved one has made and help them go through the planning together.
Here are some essential things you should know about the end of life care plan:
- Start preparation on time: Talk to your family and regarding placement, treatment, and the wishes you’d like to accomplish. Contact centers that provide hospice and palliative care and see their options for physical, emotional, and spiritual treatments.
- Seek financial and legal advice: Family members of the patient should seek advice regarding a living will, attorney, and other legal documents that set forth a patient’s wishes for health care in the future so that family members know what their preferences exactly are.
- Put values first: If a patient hasn’t prepared a living will, or you’re not sure how they would like to spend their last days, you should act on what you know and feel their wishes are.
- Resolve family conflicts: Families can’t always agree about the best option for their loved one, which often leads to disputes. Such conflicts may have a negative effect on a patient’s condition and family relations, which is why it’s critical to consult a trained doctor, social worker, or hospice specialists that can offer mediation assistance.
- Talk to other family members: Family members should work together and find solutions that would fulfill a patient’s needs and wishes. They should be supportive and ready to accept their loved one’s decision for or against life-prolonging treatments.
End of Life Care Options: Home or Nursing Facility?
Patients and their family members are free to choose whether they want to receive care at home or in an inpatient facility, such as a hospice center or nursing home. Most patients prefer to stay at home during their last days and to be surrounded by people they love. Moving to a facility can be stressful for a patient, especially for those with Alzheimer’s disease or other types of dementia.
End of Life Care: Hospice at Home
Hospice end of life care is mostly provided at home, but patients and their families can also rely on hospitals or nursing facilities. When received at home, hospice center designates a primary caregiver (usually a family member or a patient’s close friend), who should supervise the patient 24/7. Still, a caregiver can count on regular visits of hospice staff and around-the-clock on-call support.
The experienced hospice team will be there to help you with a patient’s personal care needs (such as bathing or eating), speech and physical therapy, and emotional and spiritual support in line with a patient’s beliefs. Emotional support is also offered to the patient’s family, caregivers, and their loved ones, who can count on bereavement support after the death of their relative.
End of Life Palliative Care
Palliative care also forms part of the end of life care, but it encompasses some more aspects. Unlike hospice care, which requires the patient to give up their curative treatments that don’t work anymore, palliative care can be used simultaneously with curative therapies. Besides, a patient doesn’t need to meet the six-month prognosis requirement.
Palliative care can also be provided either at home or in a nursing facility. The latter can be common when patients need to receive aggressive treatments in hospitals or other facilities that offer adequate medical equipment.
Palliative end-of-life care will provide emotional, mental, and spiritual support to both patients and their families. Besides, palliative care providers will do their best to help people get rid of the symptoms of pain, anxiety, depression, and other inconveniences caused by progressive disease.
End of Life Care: Final Stages of Life
Despite the unconditional support of hospice and palliative care centers, symptoms that the patient feels will worsen as time passes. However, it’s critical to know that such symptoms may not indicate that the death is close, but they should remind you that you should dedicate yourself to your loved ones and spend more valuable time with them.
It’s essential to pay attention to the following signs and act accordingly:
- Lethargy: Final stages of life involve a lot of sleepiness and tiredness that the patient frequently feels, which is why it’s critical to visit them and plan some activities when they are most alert.
- Unresponsiveness: Your loved one may seem unresponsive when you talk to him/her, but the truth is that the sense of hear dies last. That said, a person can hear you even though they might not be able to speak.
- Confusion: Patients are often unaware of the time, date, and people around them. Speaking with them can help them re-orient and become more conscient about their surroundings.
- Loss of appetite: Patients might not feel the need for food or fluids, and you shouldn’t force them to eat or drink. Still, it’s critical to keep their mouth moisture with glycerin or lip balm.
- Loss of bladder or bowel control: Such an inconvenience is common in terminally ill patients. That said, it’s vital to keep them as clean, dry, and comfortable as possible.
- Skin becomes cool to the touch: Since patients may feel cold, you should warm them with blankets. However, it’s not recommended to use the electric ones or heating pads since they can provoke burns.
- Irregular breathing: You can help the patient breathe much easier if you turn their body to the side and place pillows beneath their head and behind their back.
End of Life Care: Emotional Support
Sometimes it can be more challenging to deal with emotions than with physical issues. Patients are often concerned about the loss of control and loss of dignity as their physical abilities decline, which may lead to increased stress, anxiety, and depression. You can help them by providing emotional support and not letting them feel abandoned.
- Be with them and keep them company: Talk with your loved ones, read to them, watch movies together, and do other activities that would cheer them up.
- Don’t disturb them with your problems: It’s essential not to talk about your issues, concerns, and fears in front of your loved one, who can become quite upset.
- Encourage them to talk about their fears: Although families find it difficult to cope with death and critical moments before it, it’s vital to encourage your loved ones to talk about their worries and end-of-life concerns. Try to listen to them carefully and not to interrupt them.
- Allow them to reminisce: Talking about their life and the past may help patients gain a more comprehensive perspective on their life.
- Fulfill their wishes: Make sure that you fulfill the wishes of your loved one, although you might not agree with them.
End of Life Care: Bereavement Support
The period that comes after your loved one’s passed away can be tough and challenging for most people. Therefore, most hospice and palliative care programs offer bereavement support, which helps families overcome the grieving period more comfortable. Bereavement support often lasts one year after a person’s gone, and it’s free of charge.
Grieving support is a vital step that helps you focus on self-care, which is especially important if you used to be a person’s caregiver. It will help you move on and accept the circumstances that might not be the best at the moment.