Hospice Care: Supporting terminally ill patients and their families
I was sick
and you visited me.
Hospice, as you probably know, is a program of care for individuals suffering from life-threatening diseases when their doctor sees no hope for recovery. In the US, hospice care is covered by Medicare and/or private insurance when the patient’s doctor certifies that their life expectancy is six months or less.
The descriptions of who pays which expenses were confusing. In Canada hospice care is often in a hospital setting and covered by the provincial health care system. Hospice care in other facilities and at home is less common and how it is paid for was even less clear than in the US.
Hospice care surrenders all attempts at disease treatment and recovery and focuses on pain management and other forms of palliative care. Hospice care can be provided at the patient’s home, or in a facility dedicated to such care, or in a hospital.
In the US there are many hospice care providers. The largest, Vitas Healthcare, provides care to only 4.5 % of patients and in only 14 states plus DC. The top 100 providers care for only about 40% of all patients. The top five US providers are Vitas Healthcare, Kindred Healthcare, HCR Manorcare, Amedisys, Inc. and Seasons Hospice and Palliative Care. These top five are out of about 4500 providers.
As is true for nursing homes as well, there are many hospice providers who are providing very poor care; they are either poorly managed or more interested in profits than patient care. There is a Medicare webpage with a long list of providers who are under consideration for being de-listed as Medicare-supported. Be cautious, even though their patients would still need you.
Individuals in hospice care certainly would love to have you come visit, either at their homes or at the facility where they stay. They are likely to be lonely, scared and bored. At-home care typically involves a nurse visit twice a week and a home health aide three times a week. Otherwise the patient is on their own with support by nearby family members if any.
While most descriptions of how you could support a person in hospice care seemed focused on individual volunteers, perhaps there could be opportunities for a group of two or three. Show up together and keep the conversation going, even have a sort-of party!
What Patients and their Families Need
- Simple visiting and listening. They are alone a lot and need to talk. Just listen, just be a friend.
- Maybe they will want to tell you their life story. Maybe you can record it for their family. Combine it with a photo record.
- Reading to them. Their eyesight might mean they can’t do this on their own.
- Going for a walk – if they are able.
- Taking them shopping, to a grocery, a beauty parlor or barber shop – if they are able.
- Writing a letter for them (maybe even an email).
- If they say it’s okay, bring your quiet and non-threatening pet along.
- If they still have their own pet, give it attention and walks.
- Be there all day so their family can have ‘a day off’, or even a half-day.
- Provide child care for the patient’s family – babysitting, after school care, school transport, homework help.
- Light household maintenance.
- If you have special skills, consider:
- Notary services
- Beautician services
- Tax preparation
- Musical entertainment
- Art enrichment
- Hardest of all. Be an “11th hour volunteer”. That refers to being with them as the end approaches.
- Provide their family bereavement support.
- If you decide you can’t handle the emotions of direct patient contact, you can still support the hospice provider with clerical services, grounds keeping, etc, etc.
How to Get Started
Find a local hospice provider with an online search. Check them out somehow. Call them up or fill out an online form and speak with their volunteer coordinator. The coordinator will schedule an appointment with you; together you will figure out the best match of your abilities, skills, and personality with their needs.
The coordinator will then arrange for a background check and the required training you will need. The coordinator will eventually match you up with someone who needs you.
Chaplains and Related Roles
Being a chaplain, with your knowledge of faith, might be a role for a few of you. The barrier for you might be the expectation that you need to respect the spiritual beliefs of the patient and their family; no promotion of your own beliefs would be allowed.
Some hospice providers offer training in Clinical Pastoral Education. One example is Vitas Healthcare. Their training involves 400 hours of work, of which 300 hours are in a clinical setting. There is a tuition fee, at Vitas it’s about $750.
The Hospice Foundation of America has a good website for learning about hospice care in the US (hospicefoundation.org). They discuss how you could help. The American Hospice Foundation closed in 2014 but their website is still up with useful data (americanhospice.org).
Another useful and informative site is by the National Hospice and Palliative care Organization (nhpco.org/hospice-care). In Canada the Canadian Hospice Palliative Care Association (chpca.com) and the provincial associations you can find there are good sources of information. As well, the provincial association websites have directories of hospice providers.
united states, almost 35%
are found sleeping