It can be very difficult to make choices about end-of-life care, especially for caregivers. Here is an overview of what can be expected at the end of life.
All quotations below come from the University of Minnesota guide to End of Life and Hospice Care.
Palliative care and hospice care are widely available and offer pain and symptom management and end-of-life care. Although both palliative care and hospice care provide patients with comfort and support, there are differences between the two. According to the University of Minnesota:
Palliative care can be provided earlier on in a patient's diagnosis, while they are still aggressively treating a disease. Palliative care is interdisciplinary care that aims to relieve suffering and improve quality of life for patients with advanced illness and their families. It is offered simultaneously with all other appropriate medical treatment.
Hospice care is provided when a patient and physician have determined that they are no longer going to aggressively treat the disease, yet they will aggressively manage pain and other symptoms. The patient's physician and hospice medical director certify that the illness has a prognosis of six months or less. Hospice care focuses on the family members as the primary caregivers, with the help of a skilled interdisciplinary team made up of nurses, physicians, pharmacists, physical therapists, occupational therapists, speech therapists, social workers, spiritual care providers, aides, and many volunteers who provide services such as pet therapy, hand massage, and respite for the caregiver.
The goal of end of life care is improving quality of life and asking the patient what they desire during this last stage of life. These services can be provided in the home, in a hospice residence, or in a skilled nursing facility, assisted living center, or group home.
Many terminally ill patients experience physical pain and discomfort. The fear of pain can occupy much of a patient's thoughts and bring about emotional stress.
The focus is always to offer optimal pain control and to reassure the patient that their pain will be managed. The goal of pain management is to relieve and prevent the pain from recurring.
Because pain can change over time, it is important to assess and adjust any pain management plan regularly. Medications may be added, removed, changed, or increased to respond to these assessments.
In addition to physical pain, a patient might experience emotional, psycho-social, financial, or spiritual pain.
Hospice care includes professionals such as social workers and spiritual care providers to help patients and families talk about their anger and grief and alleviate this non-physical pain.
Hospice care is typically appropriate when a physician or team of healthcare professionals agrees that a patient's life expectancy is six months or less and the patient is not responding to curative treatment.
Hospice may be considered for the advanced stages of diseases like cancer, heart disease, AIDS, Alzheimer's, and others.
Patients who are receiving hospice care generally receive:
Talk to your or your loved one's physician or another clinic staff member if you are looking for a hospice care provider. Also contact your insurance provider to ask which programs or facilities would be approved.
You can search for hospice providers by location using the National Hospice & Palliative Care Organization's website.
Hospice care uses the family members as the main caregivers with the support of a professional care team, so you will undoubtedly continue to provide basic support, such as preparing meals and helping your loved one eat or drink. As time goes on, this basic support will increase. You may need to help your loved one get changed, bathed, and toileted. You may have a role in helping them track and take medications. Use the care team as a resource to find out what you can do to best help and keep your loved one comfortable. Because these changes will occur suddenly or incrementally over weeks and months, it is important to enlist hospice assistance early. Hospice is not a loss of hope; rather, it adds life to days. Most of those who do receive hospice care report that they wished they would have started hospice services earlier.
You can do much of this yourself at home or in residence. For example, you could learn how to give a hand massage with lotion to provide comfort to your loved one. Or you could find music they like that is soothing. You can offer to give a manicure or read aloud.
Another way you can help your loved one is by helping plan for the future by getting all financial, personal, health, legal, and other information in order. Although it is not easy to broach these topics, it is important to help your loved one make these arrangements so he or she can feel closure and remain calm through the rest of his days. This planning includes bank accounts, wills, living trusts, power of attorney, healthcare directives, and funeral arrangements.
As death draws near, it is normal for your loved one to experience anxiety. It is helpful to reassure your loved one that you are there in support, and that although you will miss them, it is okay to let go.
Emotional changes may include:
Physical changes may include:
Coping with death can be overwhelming. After the passing of your loved one, bereavement services are typically available for family members for at least one year.
There is no standard way in which you should grieve. Grief is unique to each individual. However, there do tend to be a few general phases of grief. These phases include:
During these phases, you may experience emotional and physical stress. Physically, you may lose your appetite or struggle to fall asleep at night. Or you might experience tension in your stomach or another part of your body. Emotionally, you may experience depression or loneliness. Some people may not experience stress after a loved one dies. This is also normal.
While it can be uncomfortable, it is important to express your grief. This can come out in crying, talking with friends and family, writing in a journal, talking with a bereavement counselor, praying, or any other activity that allows you to process your loved one's death.