Formalizing “Person and Family-Centered” Care in Healthcare

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Editor's note: Jane Gross recently asked on the New York Times 'The New Old Age' blog if family caregivers were "mad as hell?" Kathleen Kelly, the executive director of Family Caregiver Alliance addresses this question in her post below.

December 23, 2011

By Kathleen Kelly

Currently there is only one program for adults – hospice services - that view the family and the patient as the “unit of care”. As such, they assess the needs and address the health, social and emotional care issues of entire family. Not without its flaws and gaps in service payment, hospice usually scores well on the family experience of care surveys. Hospice has operationalized “person and family-centered care” with systematic practice and quality measures.

However, there is usually a long period of managing chronic conditions or illness leading up to the use of hospice services for which there is no formal recognition of family involvement in care, no assessment of needs of the caregiver and no education or emotional support provided either directly or through referral to community services. This is true whether in a primary care setting, hospital, transitional care across acute and post-acute long term care and community services.

If 70-80% of long term support and assistance is being provided by informal caregivers, why does this persist?

We are in an odd period where the recognition of the role of the informal caregiver by health care professionals is generally high but there are no formalized mechanisms for including them as partners in care. These mechanisms would include a setting-appropriate assessment of the informal caregiver, actions taken as a result of that assessment, quality benchmarks for those processes and public reporting of the outcomes.

Right now, inclusion of the informal caregiver in a meaningful way and education provided on care tasks or community services to support an extended period of care is hit or miss. The majority of health care providers will acknowledge that the continued health of their patients with chronic care conditions will rely to some extent on the informal system of care provided by family and friends.

Many will say that the main reason their patient is not in a nursing home is the presence of a spouse, son, daughter or other family member.

We need to shift the paradigm of care from “person-centered” to “person and family-centered” systems of care. While every patient may not want the involvement of their family or friends in providing assistance, it is also true that words do matter. If we leave out the “family” in our terminology, we will continue down the road of no meaningful involvement of those who truly provide the long term assistance now and in the future. It is a big job to make this shift. But unless we do, families and friends will continue to be frustrated by a system that desperately depends on them while ignoring their basic needs.


Hello, Thank you for your writing, this is one of the most common questions we receive. Does your friend qualify for Medicaid? If so, in some states, he could "hire" you as his caregiver. Unfortunately, this is <em>not</em> in all states. One place to start is our Family Care Navigator: <a href="" title="Family Care Navigator" rel="nofollow"></a> (Click on PA) Another place to check is the National Resource Center for Participant-Directed Services: <a href="" title="NRCPDS" rel="nofollow"></a> (Click on PA). When you speak with the PA Medicaid office, ask them if there are any programs (Medicaid Waivers) that would allow you to be paid as his caregiver. You are also welcome to call our national information and referral number: 1-800-445-8106. Thank you, Sean Coffey Policy Specialist

During my husband's care, I have been advocating for him through his providers at the VA. While I now command respect from nearly all of his health care professionals, they still do not treat us as a unit. I have told many of the providers, while I don't expect you to offer me the same services as you do Richard, I would appreciate access to education, respite care, basic medical attention, and a social worker to talk to. I hope one day it is common practice to realize the unseen army that cares for loved ones at home need care, too, and but for their ceaseless work, these loved ones would be in nursing homes and hospitals. You hit the nail on the head, Kathleen, Thanks for that! Leeanne Curts.

Thanks for the comments, Leeanne and Carol.We do indeed have a lot of work ahead to truly incorporate families into the health care system. The only other "experience of care" survey that is published for public view is the Hospital Consumer Assessment of Healthcare Providers and Systems (Medicare: Hospital Compare Datsa) that is from the patient's perspective (no clue as to whether those with cognitive impairments had proxy input from families) and the sampling is very low. Carol, only one question regarding transitions which I am sure you already know. Yes, lots of work to do!

For the almost 2 years that my son was in a hospital/rehab facility/nursing home after being critically injured when a friend fell asleep while driving, I was his voice and his advocate. I'm sure to some of the medical personnel we encountered over that time, I was a royal pain in the butt... but I didn't care. We endured a number of unbelievable events during that time. The straw that broke the camel's back, though, was when he was verbally, physically, and emotionally abused by 2 CNAs in the nursing home. I packed up his belongings and I took on the title of 'Home Health Care Provider'. I had, and continue to have, absolutely NO training whatsoever - but have figured out how to bathe my son, dress my son, when and how to give him his medications, how small his food needs to be cut up for him to be able to eat it, etc, etc, etc. I do get paid by the County/State, but I get minimum wage - for a job that is 24/7 (he requires protective supervision due to brain injuries). I have a family member who has agreed to be my son's caregiver in the event of my death - and all of his siblings know, without any reservation, that he (and I) are NEVER, EVER, to be put in a nursing home. I was at the nursing home with my son every single day... yet he fell out of bed, medications were missed, baths not given, and then the ultimate abuse.

Thanks, Kathleen. It's ironic that the one service that formally recognizes family caregivers -- hospice -- is also the one that family caregivers are most reluctant to use. (Palliative care also recognizes families but of course it's not a formal benefit like hospice.) And while health care providers are more likely to recognize (at least rhetorically) the role of family caregivers, they are likely to see them as patient/family -- what I have described as a chimera as fantastical as the fire-eating lioness/goat/snake of the Iliad. Family caregivers are not the mirror image of their family members. We're a long way from acknwleding that.

Valerie, I would like to know how you got paid, even if it is minimum wage. I have been providing care for a very close friend since 2004, without being paid. How did you find a way to be paid. I worked from home since 2001, so it was a no brainer. I to became his advocate. I am in agreement with you on the nightmares of leaving someone you care about in the arms of people who appear not to care at all. I saw those same abuses,the person I care for has servere diabetes. He has no feeling in his hands and feet, and has completely lost his eyesight. That is devestating, not to mention terrifying experience, to a once sighted person. I lost my job in september, due to the economy, and am now in the process of filing bankruptcy. I am losing my home and vehicle, etc. These were the surroundings that he was used to, which allowed him to do a small amount of things for himself, (ei. going to the bathroom and taking a sponge bath) Now he won't have those same surroundings. I can't leave him in the house by himself all day while I go to work. He requires 24/7 care. He can't even dial a telephone. We live in Pennsylvania, so I am not sure which organization you contacted, but I would appreciate it if you could steer me in the right direction. We seem to be getting the run-around from all the organizations. I am at my wits end. Yes, I could put him in a nursing facility, but we both know how that will turn out. We live in a society that cares more and has more advocacy for animals than people. I appreciate any help you can provide. Thank You and I look forward to your response.

I agree with Stephanie I also live in Penna and it must be the most difficult state to get paid or help I had a friend who relocate to CA. I try and try to wait and be patient as they always sound egar tell you thy will get back but it always the same a big fat NO. The state of CA paid all family care taker good money at least I know for the children family caretaker that I do know and you can still have a nurse. I was denied paid in PA for taking care of my adult niece because they said it against the law of Penna to pay if you are a legal guardian and also the relative of that person. I have been her guardian and only care taker since birth. They rather paid an outside person lots of money rather than give us even half the amount of money. If I want an outside person than I might as well put her in a nursing home. My daughter had nursing because it was manitory as a school child but those years was the most hoorrible times. My daughter still has nightmares from the non caring, non educated nurses. It seem like they all came from disfunctional homes themself or live another life in a bar on their free time. You have to constantly educate them but it goes in one ear and out the other. They eat, sleep, watch TV all day and run your electic bill up. After many years it was difficult for me to work as they would often call out sick. Many many times I had to leave my job to go to the school and be the nurse when they call me and say they have a family emergency which generally was not true. There husband will bring their children to my house so the mother the nurse can watch them while carry for my daughter, fight with their teen children and sponse on the phone which always frighten my daughter. Having nursing in your home is a nigthmare and a major family disruption. We are already under stress and they bring more stress. I stop working eight years ago and we live off my daughter SSI to pay bills. Welfare gives you enought to pay one small household bill forget about buying clothing or shoes I am sorry if I sound angry but none of this is fare to a caretaker.