Why create a checklist when starting hospice?
Your loved one and family have decided to use hospice services for end-of-life care. Now that your decision has been made, it’s time to prepare. This includes everything from a hospice plan and getting necessary medical equipment, to finances and family time. Having a checklist helps to guide your process, assuring that all needs are addressed.
Preparing your home for hospice
When beginning home hospice, the home environment should be adjusted to accommodate care for your loved one. A comforting space at home assures that your loved one’s needs are met. The changes you make depend on your loved one’s priorities, wishes, and the home’s layout. Accommodations to consider include:
Access and Mobility
- Install a ramp to make access into the home easier. This is the case if your loved one can still go outdoors and wishes to do so, including via wheelchair.
- Reduce mobility challenges around the house. This may mean widening a doorway for a wheelchair.
- Remove fall and tripping hazards by storing away scatter rugs and extra pieces of furniture.
- Provide space where family members can visit without interrupting your loved one’s privacy and rest.
- Accommodate the home to meet the care needs of hospice caregivers, such as nurses and home health aides.
Comfort and cleanliness
- Equip the home with easily adjustable temperature and light levels.
- Maintain minimal distractions and a noise level that is suitable for your loved one.
- Keep the home safe, clean, and welcoming.
- Cleanliness and germ protection are assured by use of hand sanitizers and wipes.
- Request those who don’t feel well to visit when they are better.
Bedroom and bathroom spaces
You may need to adjust the bedroom and bathroom spaces for care, comfort, and safety needs.
- Select a bedroom area that is private if possible.
- Choose the bedroom that is closest to the bathroom. Or, a commode can be kept near the bed, with a bedpan and urinal available.
- Keep personal and entertainment items within reach of your loved one. This can include photos, reading material, TV or radio, and special mementos. Glasses, tissues, beverages, lip balm, and other care items are handy.
- Prepare the bathroom for safety.
- Install handlebars and rails around the toilet and in the bathing area.
- Add a non-slip mat and bathing chair in the bathtub if needed.
Durable Medical Equipment (DME)
Make sure all durable medical equipment items that promote safety and comfort are ordered and delivered. These vary based on your loved one’s and your needs and safety.
- A hospital bed provides safety and comfort for both the patient and caregivers. It has various settings that help a person to be upright while the bed can be elevated.
- Wheelchairs, walkers, and commodes help to assure safe mobility and ease of toileting.
- Oxygen equipment promotes comfort for those with limited breathing ability.
Organizing documents and information before hospice
Organizing Health Information
Have a patient care file available for family and professional caregivers. This can include:
- Relevant medical information.
- Documents related to medications and treatments.
- Instructions for using a hospital bed.
- Special notes such as changes in your loved one’s condition, level of pain or comfort, or elimination. (Notes are updated when your loved one makes a new request or changes a past one).
Organizing Legal and Financial Documents
It is helpful to get your loved one’s legal and financial affairs in order before or right at the start of hospice. There are numbers and documents you’ll want to be able to access and have up-to-date for those who may need them, such as healthcare providers and facilities. This list includes:
- Your loved one’s Social Security number.
- Medicare information.
- Long-term care insurance, if your loved one is enrolled in a program.
- Copies of, or access to:
- Financial power of attorney papers.
- All forms of insurance, including home, car, personal property, other real estate, and other material assets.
- Bank accounts and safety deposit boxes, credit/debit cards, stocks and bonds, 401(K) or pension portfolios, and Veterans’ benefits.
- Information about mortgages, property taxes, loans on vehicles or other property, and regularly scheduled payments, such as utilities.
- Location of deed to real estate and titles to vehicles and other titled property.
- Location of will, last wishes, and other requests for the future.
Once you’ve gathered all the above documents, distribute the information & documents using these guidelines:
- Healthcare information such as advance directives is completed and filed with your loved one’s physician. These can then be distributed to people selected by your loved one.
- Financial documents are managed by you, or someone trusted by your loved one. This person is granted financial power of attorney and is then able to pay bills. You may elect to assume this responsibility.
- Legal arrangements that include a will and wishes for property distribution. These may include information about the care of minor children, pets, and other considerations important to your loved one.
Creating a hospice plan with your loved one
A hospice plan is a living document that can vary as days and weeks go by and your loved one’s needs and priorities change. Engage your loved one, encouraging them to make as many decisions as they wish. When they ask you to decide, do so based on your past conversations and history together. You and your loved one will create the hospice plan with their hospice team. As you do so, some points to consider including are:
Shifting the focus from curative care to comfort and quality of life
- Make sure all care decisions are well informed and mutually agreed upon.
Desired space to pass
- List two or three prioritized options. Where your loved one prefers to pass matters.
- Specify who can be with your loved one at the time of death.
- Take note of which room they prefer to spend most of their time in. This can include preferences such as the bed and chair they use, and other comfort options.
Pain management questions to ask you loved one
- Is pain medication welcome even if it dulls awareness?
- It may be necessary to give pain medication even if you have not asked for it. Will you be okay with this if it looks to me like you are having pain?
- Sometimes the nurses will want to give you pain medication before a treatment like wound care. We’ll tell you about that ahead of time.
- Pain can also be relieved with changes in position. The home health aides and I may prop you up in bed, or put a pillow between your legs. This is for comfort though it helps with pain too.
- Even if it’s hard for you to talk, we can make up a system for you to let us know how much pain you have.
Inquire about comfort measures
- Are touch, gentle massage, or Reiki/Therapeutic Touch welcome?
- Do music or the TV cause pain, distraction, or irritation?
Preferences for when death is close and occurs
- Do you want the hospice nurse to be in attendance if possible?
- Are there special measures you do or don’t want for yourself?
- Do you want someone from a faith organization to visit with you when the end of life is near?
- What are your wishes about medication?
- Are there any mementos you want with you when you pass?
- What other wishes do you have that we have not discussed?
Consider your own needs as part of the hospice plan
- As a caregiver, what may you need to help relieve anxiety and fatigue?
- Would you welcome a support group or therapy?
- What is your plan for respite care?
What to expect from hospice
What to expect during a hospice admission visit
The hospice admission visit has a few goals in mind, including:
- Assuring that your loved one meets hospice eligibility guidelines. Your loved one has been referred to hospice by a doctor or other health professional due to a terminal illness diagnosis.
- Asking questions and sharing the hospice plans you are already making.
- Providing important information such as:
- Medical insurance cards and photo identification.
- Copies of healthcare-related documents, including:
- Advance directives and living will with Do Not Resuscitate (DNR) orders signed by the doctor.
- Durable power of healthcare attorney papers.
- List of medications with dosages.
- List of medical equipment currently being used.
- The names of home health staff currently caring for your loved one.
What to expect from each hospice team member
Hospice team members’ roles vary. Even then, the members meet and act together to assure that your loved one’s and family’s needs and wishes are met.
Hospice physicians are experienced in caring for people in the end-of-life stages. They go on home visits to see the patient in their own surroundings.
- They meet family to address questions and concerns.
- They prescribe medications and equipment, assuring that these are updated based on your loved one’s needs.
- They monitor a patient’s condition and make care recommendations.
Hospice nurses visit your loved one at least every two weeks.
- A nurse is assigned to manage nursing care and assure that medical orders are in place.
- The nurse or the social worker are usually the people responsible for managing a patient’s care.
- You can reach a nurse at all hours when you need to talk with one.
- Hospice nurses also watch out for you. They might suggest respite care so you have time to take care of yourself.
Hospice social workers meet patients while they are still in the hospital.
- They help to assure that your loved one has a successful transition to home.
- They work with you ahead of time to be sure care needs are in place at home, such as medical equipment.
- They are there to assist with tasks when your loved one passes, such as calling the funeral home. They can make other phone calls on your behalf, and support you with the next decisions you have to make.
Hospice chaplains provide spiritual support for patients and their loved ones.
- They provide bereavement care for individuals in their last days. This can assure that things people wish to say are shared. This can include hopes for those left behind, or words of forgiveness.
- They also provide bereavement care for caregivers and family who wish to participate.
- Chaplains can talk about grief, it’s stages, and how to manage feelings of loss and despair.
- They provide training and support for volunteers who provide compassionate care for those who are grieving.
Other hospice team members
- Home health aides are central to your loved one’s hospice care. Along with providing personal care, they are the eyes and ears of the hospice team. During their regular visits they watch for changes in condition, talk with you about those, and report them to the nurse.
- Volunteers are vital to hospice care as they represent your community’s concern for your entire family. Some have gone through their own loss. They can listen and support you because of what they have learned through experience.
What will the day to day of home hospice care be like?
Day-to-day home hospice is about focusing on your loved one’s care, comfort, and household management at their home or yours.
There are daily routines for your loved one that include hydration, meals or snacks, medication administration, and treatments that you’ve been approved to do. Others include:
- Checking in about levels of pain and comfort, emotional state, and hopes for the day. This step depends on your loved one’s condition. For those who are able to participate in this step, it offers a vital sense of control.
- Hygiene, including checking on skin condition and mouth care which is important for health and comfort.
- Movement as appropriate, in bed and out. This involves assisting with repositioning and gentle stretches or range-of-motion exercises.
- Toileting and dressing, adjusted for comfort.
- Every couple of days check on medication on hand, supplies, and level of oxygen. This helps to assure that what you need is restocked in plenty of time.
- Assuring that your loved one has a balance of rest with desired activities, including visits with family and friends. These can be in person, via video, or on the phone.
Though not every day, there will be visits by hospice team members.
- Most frequent of these will likely be home health aide visits. They will provide routine care and check in with you about any changes in condition or concerns.
- It helps to know the next visit dates of any of the professional team members. That way you are prepared to discuss your observations and what is on your mind about your loved one’s condition and care.
- You will be able to talk or text other team members as needed or desired.
What will the day to day of in-patient hospice care look like?
Much of the day-to-day in-patient hospice care is provided by the facility’s hospice staff. You are welcome to provide care as you wish.
- You are invited to stay as long as you wish at an in-patient hospice facility, or according to their visiting hours.
- Hospice staff will fulfill functions that you would do in the home setting, such as giving medications. They will provide hygiene care, perhaps inviting you to join in if you wish.
- The setting is made to be as comfortable as possible for your loved one and your family. Many in-patient hospice facilities welcome children and pets for visits with their patients.
What to expect when a hospice patient stops eating and drinking?
When someone is dying, their need for water and food lessens. This is in part because their organ function slows and they are no longer as active as they previously were, so the body needs less. Use of a feeding tube can also alter the dying process, even leading to complications in some cases.
There are steps you can take that add to your loved one’s comfort:
- Offer small sips of water, a soothing tea, or broth.
- Sucking on a few ice chips can moisten a parched tongue.
- Offer small bits of food, such as a smooth pudding or soft piece of fruit.
- Offer their favorite liquids and food slowly as you watch closely for signs of gagging.
- Have a soft cloth nearby to wipe away any drool, as that can be upsetting because of how it feels to your loved one.
- When they no longer have an interest in liquid or food, you can use mouth swabs, a moist cloth, and lip balms to keep the mouth and lips moist.
- Nourishment comes in many forms besides food and beverage. Consider some of these when the desire for those fades:
- Reading or telling favorite stories.
- Holding hands or massaging a brow or shoulders, while sharing tender thoughts.
- Little bits of humor based on your loved one’s past jokes.
- Humming or singing some of their favorite songs.
- Recalling your loved one’s special places to visit, even those from long ago. Doing so adds peace and contentment, including for you and your family.
How to best care for your loved one in hospice
People develop various skills in their lives, many of which they use as adults. Day-to-day caring of a person who is dying is likely not one. Guidelines for providing the best care you can include:
Call on the skills and knowledge of your hospice team.
- They are there to provide you with the information and supplies needed for providing good care.
- Make sure you know how to reach nursing staff during the day and after hours.
Keep your loved one safe and comfortable.
- Use your powers of observation and keep reminder notes of what you:
- Hear, see, and smell.
- Ask hospice staff how and when they want you to share your observations.
- Skin is the body’s first line of protection. It becomes more fragile with age and during illness at any age. Checking the skin several times in a 24-hour period helps with limiting skin breakdown.
- Check skin for red pressure areas, scratching at dry patches, or broken areas.
- Pressure areas are found where there is little padding between skin and bone. These include the base of the spine, heels, hips, spine, ankles, and elbows. The first sign of concern is redness that doesn’t clear in a few minutes.
- Skin can break quite easily, from bumping a bed-rail or moving against sheets. Padding and careful moving help to reduce these injuries.
- Change your loved one’s position every two hours to protect and check skin condition.
- Apply any topicals, like creams or balms, that have been recommended by the nurse.
- If okay with your loved one, take a picture of skin concerns. You can then share it with hospice team members.
- Elimination patterns can vary and cause harm to the skin. Check at least every couple of hours. Follow the nurse’s guidelines for cleaning.
- Breathing patterns change at the end of life. Close observation and knowing what to expect let you know when to share concerns with hospice caregivers.
- Do you hear coughing, gurgling, moaning, or rapid breathing?
- Coughing and gurgling mean that there’s congestion in the respiratory tract.
- Changing position, such as elevating the head and shoulders, can help.
- Talk with the nurse about your concerns.
- Moaning and rapid breathing usually mean someone is in pain.
- Try repositioning your loved one as some positions can cause pain.
- Follow the guidelines you’ve been given about giving pain medication.
- Breathing becomes more shallow and uneven in the last days and hours of life.
- The body is slowly closing its functions and this affects respirations.
- Breaths can be rapid or sporadic with increased moments from one breath to the next.
- Rapid breathing may be due to anxiety or pain.
- The sporadic type often occurs a matter of hours before a person passes.
- Talk with the hospice caregivers about changes in breathing.
- Consider using an air purifier or humidifier to refresh air in your loved one’s room.
- Temperature changes: Internal and external.
- Keep your loved one’s room at a comfortable temperature.
- Have extra lightweight bedding on hand for added warmth.
- Observe for sweating or an elevated temperature.
- A person’s temperature can go up due to limited fluid intake.
- Offer medication according to your loved one’s plan of care.
- A cool washcloth can be quite refreshing on the forehead.
- Do not use an ice pack at all, as it can damage fragile skin.
- Pain can be experienced differently from one person to the next. This is the case when a person is dying.
- Pain can have different causes. These include what’s caused by:
- Breathing and heart issues.
- Muscle cramps, spasms, or pressure points.
- Damaged nerves, wounds, or nausea.
- Dental or mouth concerns.
- Constipation, intestinal inflammation, or bladder spasms.
- Signs of pain include:
- Agitation and/or anxiety.
- Facial grimaces.
- Moaning, groaning, crying, or hollering.
- Holding on to a body area.
- Scratching or picking at skin or hair.
- Acting out, such as trying to hit someone.
- Pain is managed by:
- Repositioning every couple of hours and gentle massage.
- Talking with your loved one in a soothing voice while providing care.
- Washing face and hands.
- Administering pain medication according to directions and staying with your loved one until it takes effect.
- Consulting with hospice staff when the things you do make little difference.
- See above notes about what to do when your loved one no longer wants to eat or drink.
- Safety measures focus on your loved one’s behaviors and the environment.
- Behaviors that present safety concerns. Restlessness and agitation may increase due to dementia and/or the stages of dying.
- The goal is to prevent accidents and decrease anxiety.
- Determine if your loved one is in pain and administer medication according to the care plan if it is needed.
- Promote safety with a bed alarm, room monitor, or bed side rails, depending on the situation.
- Consult with your hospice team about their recommendations.
- Use bedding that is safe and comfortable.
- Sheets that are soft help to reduce the chance of skin tears.
- Lightweight bedding typically is more comfortable for people who are dying.
- Pay special attention to the surfaces beneath and on top of feet and ankles as these have pressure points. Heavy bedding can be uncomfortable.
- Talk with your hospice team about their recommendations for special materials to use under pressure areas.
- Avoid plastic covered mattresses as they promote sweating.
- Your loved one may still have some mobility in and out of bed. This means:
- Dressing for safety, avoiding clothing that presents tripping hazards.
- Footwear that is skid-proof yet does not cause tripping.
- Having a wheelchair or walker that is properly adjusted and without any sharp edges or places that will pinch the skin.
- Use of adult diapers to avoid dribbles that can lead to accidents.
- Learning safe movement techniques from hospice staff. This helps to assure safety for you as well as your loved one.
Signs that the time of death is near
These vary with each person. This information gives you general signs to watch for. Your hospice team will provide you with additional support and guidance.
Changes in breathing
- It can become shallow and more rapid.
- Breathing pace changes with sometimes long pauses from one to the next.
- Cheyne-Stokes breathing may precede death, often by several hours. This is a series of breaths in which there are longer and longer pauses from one breath to the next.
- Then the person who is preparing to pass takes a deep breath and the cycle begins again.
- Call your hospice nurse when you observe this type of breathing.
- There may be a rattling sound caused by secretions in the throat. It’s likely not distressing to your loved one unless they become anxious.
Anxiety and restlessness may increase
- This is associated with bodily functions slowing and a decrease in oxygen.
- Refer to the hospice care plan and staff about medications to administer at this time.
Signs of death include:
- Breathing that stops and is followed by the heart becoming still.
- Your loved one’s eyes may stay open. Their pupils are unresponsive and dilated, meaning they are large and dark.
- Their mouth opens as the jaw relaxes.
- Their body cools as the skin becomes more pale and takes on a bluish tinge.
When to call your hospice nurse
- Refer to your loved one’s hospice plan about when to call the nurse.
- This includes the hospice agency’s procedures.
- It should also include your preferences.
- Have contact information on hand so you can call as soon as needed.
Caring for yourself while your loved is in hospice
Caring for your loved one who is in hospice is an act of love and compassion. It can also be stressful and make caregivers question their abilities, stamina, and commitment. Caring for yourself is one way to assure you can provide for your loved one.
Decide what you need for your health and well-being
- Time with friends or to yourself.
- Being able to exercise or enjoy a special interest or hobby, even for short periods of time.
- Certain foods and a special meal every now and again.
- Being able to get out in nature or the community.
- A leisurely bath or massage.
- Being able to have time to focus on your family and household.
- Recruit trusted family and friends to be the caregivers while you take time for yourself.
- Regular respite care to get errands done.
Fit self-care routines within your day and caregiving responsibilities
- Use your breath to stay centered during challenging moments. Focus on it as you draw bath water or change the bed.
- Take a few moments to do gentle stretches before and after helping your loved one to move.
- Remember that your presence right now is the most important thing for your loved one.
- Allow yourself time to rest when your loved one is sleeping. It’s more important for you to recharge then do chores someone else can handle.
- Take time to sit in silence with your family member. You can let them know you are right there for them.
- Hydrate frequently, especially with water or caffeine free teas.
- Eat fresh fruits and vegetables and avoid processed junk food that can bog down your brain and energy. (All right, an occasional yummy treat eaten mindfully can boost one’s mood!)
- Let yourself laugh at silly things. These are part of life and those around you will also benefit from moments of healthy humor.
- Use self-affirmations and thankfulness, such as:
- “I am a capable caregiver.”
- “My well of compassion grows deeper every day.”
- “I am grateful to people who let me take time for myself.”
- Along with thinking up your own affirmations, put them on cards or notes for you and others to reflect upon.
- If you like to read, find something of interest to both you and your loved one and read aloud.
If you are part of the sandwich generation, caring for children and your loved one, consider steps for balancing your life.
- You may be eligible for the Family Medical Leave Act (FMLA), giving you time away from work while providing hospice care.
- Consider the benefits of respite care.
- Hospice volunteers can visit with your loved one while you do something special at home or nearby with your children.
- Call on family members and friends to pitch in. Someone fixing supper or getting groceries will give you a breather. And let you know that they care about your well-being.
Your caregiving role is a gift to your loved one and others. That includes your family, your loved one’s friends and associates, and your community. The more families there are that choose to participate in hospice care, the more others are likely to follow suit. At the same time you will likely learn things about yourself you did not know. Such as your strength, a newly found sense of patience, and deepened gratitude for others’ generosity.