Somebody going into hospice care is always bittersweet. The end of life is something we all have to face sooner or later. Relatives may be wondering what they should expect. Here are some things that may help you through this process.
Understand What Hospice Care Is and Isn’t
Hospice care is for people who are terminally ill and for whom there is no cure. One common myth is that a hospice is a specific place, like a nursing home. Instead, hospice is a type of care that can take place in a nursing home, a specialist hospice facility, or the patient’s own home. Most hospice care does happen at home.
Hospice care is about maximizing the quality of life as the end approaches, focusing on compassion, emotional and spiritual support, and pain management. The idea is to keep the patient as comfortable as possible, but not to try and cure them or extend their life. In some rare cases, a patient may recover enough while in hospice care to be able to leave it, but this is not something you should expect to happen.
Hospice is generally recommended when a patient has six months or less to live, although research is being done to combine hospice and curative care and thus expand its availability. It is not 24/7 nursing care, except for specific circumstances, and does not necessarily replace the need for a health aide, adult daycare, etc.
How to Prepare for Hospice Care
The first step is to choose a hospice provider, taking into account budget, geographical location, etc. Most hospice care does take place at home. If your loved one is in an assisted living facility or nursing home they may have a recommended provider. Try to choose a provider that has a board-certified doctor. Once you have made your choice, the hospice will send a representative to meet with you. The initial meeting, which is free of charge and without obligation, should at least include the patient and those members of the family directly involved with care. The representative will help you understand the services and payment options and assess your loved one’s condition.
Your loved one may be admitted at this point. A plan of care will then be developed, which will be discussed with you and your loved one. It’s important at this point to respect their needs and desires over your own; many relatives try to focus on things like extending life that may not be your loved one’s goal.
What Will Hospice Care Entail?
A typical care plan will include:
- Palliative care and symptom control, which may include pain management and the treatment of other symptoms. Generally, when somebody is in hospice, less care is taken to worry about things like addiction.
- Respite care. If your loved one is in hospice for an extended period, then the provider may offer respite care. This means that your loved one is moved to a facility such as a nursing home for a brief period so you can get a break from the work of giving care, go on vacation, visit other family members, etc.
- Spiritual care. If you are religious, the hospice provider may refer you to an appropriate chaplain. Alternatively, your current spiritual advisor may be involved in the plan of care, particularly if you or your loved one belong to a minority religion. Spiritual care is offered not just to the patient but to the family.
- Family meetings. The hospice care team will meet with you regularly to keep you updated on your loved one’s condition. Daily updates are also given during routine care, but routine meetings can be greatly helpful.
- Counseling for relatives, including bereavement counseling. A good hospice care plan includes counseling for the family. This counseling may continue for a period of time after your loved one passes. It also includes advice on how to avoid burnout, keep from resenting your loved one, etc. They may also refer you to a support group for people in similar situations. This counseling is generally provided by a trained social worker who can also assist with advanced directives.
- Occupational, physical or speech therapy. This might include dealing with the effects symptoms are having on speech, providing activities the patient can continue to do with their condition, keeping them moving so they don’t develop bed sores, etc.
- House calls from the hospice doctor. Most providers do house calls. Alternatively, they may assist with transport to the doctor’s office.
- Assistance with activities of daily living including bathing and dressing, as needed.
- Companionship, such as having a nurse or aide stay with your loved one while you run errands.
- Education on how best to care for your loved one.
Hospice care plans are designed with the needs of both the patient and family in mind. The plan might be quite different, for example, if your loved one is in another state and doesn’t want to leave. Providers take into account the patient’s condition and symptoms, the availability and needs of the family and the patient’s preferences when designing a plan of care.
When Your Loved One Passes On
The most common outcome of hospice care is that the patient passes on. Hospice care includes specific end of life provisions. When your loved one dies, if the hospice nurse is not present you should call them, as they can do the pronunciation of death and the hospice doctor can then sign the death certificate.
If you see signs of approaching death, then you should call the hospice nurse.
Ideally, you should already have made arrangements for the funeral along with your loved one. Prepaying for the funeral and making the arrangements in advance takes a lot of stress off the family.
You will continue to work with the hospice team through the bereavement period. The same counselors will help you deal with your grief and start to move on. You may join a support group. Hospice staff can also sometimes give advice on matters such as putting your relative’s home up for sale and dealing with the estate, simply because they have seen it so many times before.
Hospice care may sound a little bit frightening, but there is a time in life when it is in the best interests of your loved one. Remember that accepting death is not giving up, and be sure to choose a good provider that can help you come through this hard time in your life.
