Discussing end-of-life for a loved one is a difficult topic of conversation for most families. But understanding what to expect–and what you can do to help ensure your loved one’s comfort in the final stage of their life–may help to ease the journey for both the family and the loved one.
In this guide, we’ll discuss the various stages of end-of-life care, what it means for you and your loved ones, and the proper decisions that need to be taken in order to help ease the process.
What is End-of-Life Care?
There are many dimensions to end-of-life care. The decisions that go into end-of-life care vary, often including the following:
- Identifying the need for end-of-life care
- Weighing options surrounding practical care and assistance for everyday activities
- Ensuring mental and physical comfort
- Facilitating proper communication between the family members and loved ones concerning end-of-life wishes
In short, end-of-life care shifts focus from curative measures/treatment, towards making the patient as comfortable as possible in their final stage of life.
An important thing to note is that end-of-life care measures aren’t about giving up. Rather, they are a way to ensure that proper care is being taken in the last phase of life in order to help alleviate any discomfort or suffering experienced by your loved one.
When to Consider End-of-Life Care
There is no single point that determines when end-of-life care should begin. As such, when the process should begin depends on the individual and their state of health.
In some circumstances, as in the case of Alzheimer’s disease or cancer, the patient’s doctor may provide you with information on stages in the diagnosis that can help you gauge the need for end-of-life care.
Some more obvious signs would include the following:
- The severe progression of Alzheimer’s symptoms
- When a patient’s health care team determines that the cancer can no longer be controlled, which is when medical testing and cancer treatment often stop.
In other circumstances, it may be much more difficult to know when the topic should be discussed. The following signs may indicate when it is necessary for the discussion on end-of-life care to begin:
- The patient has made multiple trips to the emergency room, their condition has been stabilized, but the illness continues to progress significantly, affecting their quality of life
- They’ve been admitted to the hospital several times within the last year with the same or worsening symptoms
- They wish to remain at home, rather than spend time in the hospital
- They have decided to stop receiving treatments for their disease
How to Plan Appropriately for End-of-Life Care
As we mentioned, talking about end-of-life care can be a rather difficult conversation for anyone to have, but it’s important to remember that end-of-life care is meant to provide physical, mental, and emotional comfort, as well as social support, to a loved one living with and dying of advanced illness.
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When planning for appropriate end-of-life care, there are at least four areas that should be considered.
Those include the following:
- Practical care and assistance. As you transition towards end-of-life care, it may be necessary to provide your loved one with assistance for everyday activities, such as bathing, feeding, going to the bathroom, and getting dressed. Along with your own efforts, extra support can be provided by personal care assistants, a hospice team, or physician-ordered nursing services.
- Comfort and dignity. Aside from ensuring your loved one is cared for physically, end-of-life care patients should feel at ease mentally, in order to prevent feelings of loneliness and fear of dying. Ensuring your loved one that they have the support of their family and those around them is vital to maintaining a comfortable journey.
- Respite Care. Although you may not want to leave the side of your loved one, having a moment to recollect your thoughts can ease the intensity of end-of-life care. Respite care can help provide you comfort through a brief inpatient stay in a hospice facility, or having a hospice volunteer care for your loved one for a few hours.
- Grief support. Another important aspect of end-of-life care is preparing you and your family for the coming loss of a loved one. Consider consulting bereavement specialists or spiritual advisors before your loved one’s death in order to help ease the transition.
Home Care or Inpatient Care?
When assessing end-of-life care, a patient and their family can have the option of home care or inpatient care.
- Your loved one may prefer to be as close as possible to their family as they go through end-of-life care. Should they choose to have end-of-life care administered in their home or a family member’s home, you or a loved one can assume the role of caregiver, or enlist the help of hospice care professionals.
- Another option is inpatient care. Inpatient facilities can provide round-the-clock medical support as well as palliative and hospice care.
Final Decisions and Preparation for End-of-Life Care
While end-of-life care is certainly a difficult subject to discuss, careful planning for the final stages of life can help put you and your loved ones at ease.
For our last section on end-of-life care, we’ve outlined several decisions that need to be considered during end-of-life care planning.
Taking the time to make these decisions helps to ease an already difficult process, allowing you and your family to devote more time and energy to providing comfort to a loved one in their final stages of life.
Once you and your loved one have made the decision to begin end-of-life care, it is important to make the necessary arrangements as early as possible. These may include:
Assessing end-of-life wishes
- It is always important to consider the spiritual practices and memorial traditions of your loved one. Be sure to ask what they are most comfortable with–having their input will put you and your family at ease, knowing that you are fulfilling your loved one’s wishes.
Choosing a primary decision maker
- Once your loved one’s end-of-life wishes have been assessed, it may be necessary to designate one family member as the primary decision maker who will manage information and coordinate family involvement and support. Proper communication and coordination make it easier to make final decisions.
- If your loved one has expressed a preference as to who should take lead, please take that into consideration.
Making financial and legal arrangements
- One way to ensure that your loved one’s wishes are properly understood is by seeking financial and legal advice. Legal documents such as a living will, power of attorney, or advance directive can set forth a patient’s wishes for future health care so that family members are all clear about their loved one’s preferences. This in turn can prevent unnecessary family conflicts that prevent you from devoting your time to providing comfortable living for your loved one.
Sudden end-of-life decisions
Unfortunately, some loved ones are unable to express their final wishes due to a number of reasons. Should this occur, you may consider the following:
- Consider conversations in the past that may have indicated their final wishes
- Consider treatment, placement, and decisions about dying from the patient’s vantage point
- Seek medical and legal advice for the best possible outcome
Although involving children may be a very difficult choice to make, some families feel that it is necessary. Should you choose to do so, experts suggest explaining the events in terms they can grasp. These may include: storytelling, drawing pictures, or using puppets to simulate feelings.
We know that end-of-life care can be difficult, but it is important to keep in mind that these decisions are meant to help provide care and comfort for your loved one.
If you are unsure about where to start and have some hospice-related questions, it might be wise to speak to a hospice or end-of-life facility. Doing so will allow your family to make informed decisions about the appropriate next steps–making a significant impact in your lives as well as in the lives of your loved ones.