Taking in one last mountain sunrise. Attending your granddaughter’s wedding. Digging your toes in the sand. Visiting your adult child for an extended stay.
One common myth about end-of-life care is that hospice patients cannot travel. Many imagine the last few months mean the patient is strictly homebound and bedridden with round-the-clock care.
However, Medicare hospice coverage* includes provisions for temporary short-term arrangements and transfer of hospice services while traveling. This opens the door for patients to enjoy a memorable vacation with loved ones, travel for a special occasion, or fulfill a final wish.
“One job of hospice is to define the goals and end-of-life wishes for the patients,” said Shari Christian, Vice President of Clinical Services for Heart to Heart Hospice in Plano, Texas. “We want to keep patients comfortable and as independent as long as possible, giving them a hospice journey that they desire.”
Rachael Fuqua, a Community Education Representative with Heart to Heart Hospice in North Houston, relayed a story of a father who reunited with his son during his final months of life. Heart to Heart Hospice was instrumental in making the connection, then taking care of the details to fulfill the father’s wish to travel with his son to the Midwest to visit family.
The trip was such a success, the father/son duo traveled again for a gambling trip to Louisiana. Each time, Heart to Heart worked diligently to collect necessary medicines, make arrangements in case of an emergency, and transfer to a contracted hospice team at their destination point.
“Forgiveness, reconnecting, and saying goodbye were paramount for them both to reach a place of comfort and peace,” said Fuqua. “The situation really struck me at the time, but even more profoundly when the son called a year or two later asking us to care for his mother,” she added. “He remembered and deeply appreciated the relationship we facilitated with his dying father. To me, that is what the ‘Heart to Heart’ in our name is all about.”
“We help caregivers know what to expect,” said Christian. “We want to provide a seamless journey to travel, and also when they return home.” She recalled a mother who went on a cruise with her loved ones and a biker who enjoyed one last motorcycle ride. These priceless memories are achievable as the hospice team makes preparations and a willing caregiver takes their caregiving on the road (or airplane or boat).
Preparing for Travel & Hospice Requirements
Traveling with a hospice patient is no small feat, but the rewards are invaluable. A patient or family can initiate the request to travel, then the entire Heart to Heart Hospice team — as the managing hospice provider — takes action to make it happen.
Together, families and the hospice provider determine if the patient is stable enough to travel. Hospice doctors, RNs, social workers, chaplains, business offices, patient care secretaries, and even executive directors coordinate the moving parts:
- Arranging for needed medical equipment to be delivered and picked up at the vacation destination.
- Gathering needed medicine and equipment for travel.
- Transferring to a contracted hospice provider in the area (Heart to Heart Hospice if available or another Medicare-certified hospice in the region) and completing the necessary paperwork.
- Providing local pharmacy and hospital contacts in case of medical needs or emergencies.
At the contracted hospice destination, all aspects of care continue as required, including nursing visits, aide support, social services, and spiritual support. If the stay is longer than 15 days, a care plan review may be due and provider changes considered. There is no time limit on the vacation, but caregivers and patients can initiate a transfer to a new managing hospice provider or revocation of Medicare hospice benefits.
“We also equip caregivers to anticipate needs and prepare them for a modified environment,” said Christian.
Travel Tips for Hospice Caregivers
After the patient is deemed stable for travel and the managing hospice team sets things in motion, it’s time for you, as caregiver, to anticipate the patient’s needs while out of town.
- Carry contact information of the contracted hospice provider at your destination, as well as addresses and numbers of the local hospital and pharmacy.
- Airports or busy destinations may be noisy or overwhelming for a patient. Take noise-canceling headphones and plan extra time to move slowly and reduce stress.
- Think through modes of transportation and special accommodations, such as a car service that has room for wheelchair storage, needed assistance at the airport, and accessible hotel rooms.
- Determine if the room has a refrigerator for meds.
- Take medications in their original containers. Remember to keep all medications with you in a carry-on bag (not checked baggage) if flying. Take enough meds and supplies for the duration of your trip.
- If medications require syringes or needles, carry doctor’s documentation, plus a small discard container.
- Carry pertinent medical records and information with you.
- Contact the managing hospice provider when you arrive.
- Remember to keep the patient hydrated and other needed supplies, like sunscreen, hats, bandages, ointments, and more.
- Be flexible. If the patient needs extra rest and plans need modified, including shortening your trip, make their comfort a priority.
Hospice is Always Available
“Hospice is a hospital without walls 24/7, 365 days of the year,” Christian said.
Hospice never takes a break from supporting patients and caregivers and intaking patients every day of the year, including weekends and holidays. Hospice staff is available to answer calls and access 24-hour pharmacies for needed meds and equipment. Christian relayed an instance when an executive director drove out of state to a 24-hour pharmacy to meet a patient’s needs.
Before holiday weekends, staff often “tuck in” patients to ensure they have medicines, supplies, and evaluations so the family can enjoy the holiday together.
If the caregiver wishes to travel or take a break for a few days or the hospice patient is unable to travel, caregivers can request short-term respite coverage at a contracted respite facility (for up to five days) or hire a private in-home nurse or aide.
Memories of a Lifetime
Whether it’s a weekend trip or a destination vacation, these final excursions often provide closure, peace, and comfort for patients who receive a terminal diagnosis.
“Helping people identify their [end-of-life] goals and wishes is the most important thing we can do,” said Christian. “It’s the most rewarding thing I’ve ever been a part of.”
“Our hearts truly care for their hearts,” added Fuqua, who volunteers her time leading caregiver support groups and as a community educator for the Alzheimer’s Association, in addition to her work at Heart to Heart Hospice. A committed hospice provider walks alongside caregivers, making the process less intimidating.
Hospice patients can check off one final “bucket-list” memory-making vacation as caregivers and hospice providers work to make it a reality. Contact your hospice provider to inquire about traveling while on hospice.
Read these FAQs on traveling with a hospice patient from the Texas and New Mexico Hospice Organization.
*The Medicare Modernization Act of 2003 provides that most patients receiving Medicare hospice benefits are eligible for care from another Medicare-certified hospice at their destination.