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.
What is end-of-life 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.
When is hospice appropriate?
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.
What services does hospice offer?
Patients who are receiving hospice care generally receive:
Visits from nurses who have been educated in pain and symptom management
Assistance with bathing and personal needs from hospice aides
Medications and other medical supplies needed to reduce pain and discomfort related to the terminal diagnosis
Counseling and bereavement support for the patient and family members, provided by social workers or counselors
Visits from spiritual care providers, as desired
Trained volunteers to help the patient and family with various tasks
Speech, occupational, and/or physical therapy, as needed. These therapists can help identify a patient's skill level regarding communication, movement, strength, and range of motion, and provide tips about how to best communicate with your loved one or how and when to assist them with daily needs.
How to find hospice care
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.
What can you do for your loved one?
Provide Basic Physical Support
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.
Help with Lifetime Planning
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.
What to expect In the dying process
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:
Withdrawal or shutting out external stimuli, such as television or other people. The patient may seem to sleep more frequently. This is normal.
Extreme anxiety or restlessness. This may include fidgeting or making repetitive motions with one's hands. You may help your loved one by distracting them with something they love, such as music, or by talking with a nurse about ways to reduce anxiety.
Confusion or disorientation. Your loved one may get confused about where they are, what day it is, or even who you are. You can help them by gently introducing yourself and giving them reminders about where they are and what they are doing.
Hallucinations. Your loved one may experience hallucinations, which can be a result of decreased oxygen in the blood.
Physical changes may include:
Weakness or a loss of sensation
Skin color changes. Sometimes the skin turns a darker color on the underside of the body, and fingernails and toenails turn a pale blue color.
Changes in breathing patterns. If your loved one breathes through their mouth consistently, they may get dry lips and mouth. You can help by applying chapstick and offering them ice chips, water through a straw, or even a damp washcloth. The breathing rhythm may also alternate between shallow and deep, fast and slow. As the breath slows there may be longer periods between any breath, which are known as "periods of apnea."
Decreased ability to cough or swallow oral secretions, such as saliva and mucous. This may result in a gurgly sound heard during breathing. You may help by elevating your loved one's head.
Decreased blood pressure
Hearing is the last sense to leave, so assume your loved one can hear you even in the final stages.
Coping with grief
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:
Shock and denial
Longing for connection to your loved one
Despair and disorientation
Adapting and acceptance
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.
Hospicelink directory of hospice and palliative care programs: 1-800-331-1620
National Hospice and Palliative Care Organization: 703-837-1500